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Getting Started: Some Frequently Asked Questions About NHS Continuing Healthcare

NHS Continuing Healthcare – Frequently Asked Questions

If you’re new to NHS Continuing Healthcare and are looking for advice on care funding, read these NHS Continuing Healthcare FAQs first. The information could save you paying for advice.

These are some of the most frequent kinds of questions families ask, and the information here can help you with your own care situation. Remember that Care To Be Different’s primary focus is NHS funding, not the whole range of local authority payments and benefits.

This NHS funding is called NHS Continuing Healthcare. Many families report being given false information by the health and social care authorities when a relative first needs full time care. As a result, many people end up being wrongly told to pay for care. NHS Continuing Healthcare funding covers 100% of the costs of receiving full time care either at home, in a care home or elsewhere. However the assessment process is not always straightforward and many people report having obstacles put in their way by the care authorities or are simply ‘overlooked’ for funding, whilst others are not even assessed at all. In some cases, many assessments are carried out incorrectly and health needs are ignored.

The following NHS Continuing Healthcare FAQs will give you a better understanding of your own position and what you can do to ensure your relative is properly assessed or reviewed:

NHS Continuing Healthcare FAQs

“I need to know what funding my mother may be entitled to?”

Specific funding entitlement will depend on each individual situation. However, if a person needs full-time care and has health needs, the first thing that should happen is an assessment for NHS Continuing Healthcare funding – not a financial assessment or means-test. NHS Continuing Healthcare is NHS funding and it covers the full cost of care for people who meet certain criteria. Those qualifying are said to have a ‘Primary Health Need’, i.e. their primary need in terms of care is a health need. Read the NHS Continuing Healthcare guidelines, particularly the Decision Support Tool, to find out what these criteria are.

“My father’s had a financial assessment and I need to know what he has to pay?”

“My mother has a house. Does she have to pay for her care?”

“We’ve been told my brother has to pay for his care because he has savings. Is this true?”

This is a vital point – and many families are given misleading information about paying for care. It is NOT a person’s money, home or assets that determine whether they have to pay for care; instead, it is their health and care needs. It doesn’t matter how much or how little money a person has – if they have healthcare needs and they meet certain criteria (as outlined above for NHS Continuing Healthcare), they do not have to pay. Almost always, the first question the authorities will ask a person is about the person’s house or their savings. However, the first question should be about their health and care needs.

“I can’t afford to pay for my husband’s care. What should I do?”

If a person is genuinely shown to have to pay for care, i.e. they are not eligible for NHS Continuing Healthcare funding, no family member or friend should be asked to pay for that care; it is only the person who needs care who should have to undergo a financial means-test. The health and social care authorities should not ask anyone else to disclose their own finances. In the case of a husband and wife or partners, this information from AgeUK may help: Paying for care if you have a partner.

“The NHS said they will only provide Continuing Healthcare funding in a nursing home, not a residential home. Is this right?”

It doesn’t matter whether a person is in a residential home, a nursing home or in their own home – NHS Continuing Healthcare funding is available to all individuals who need full-time care and who meet certain criteria in terms of their day-to-day healthcare needs. The type of home or care facility the person is in is irrelevant. The National Framework guidelines make this clear. Read more about Continuing Healthcare at home.

“What exactly is assessed in NHS Continuing Healthcare?”

Assessors look at health and care needs in 12 different care ‘domains’. These domains are different aspects of health and care, such as breathing, behaviour, cognition, continence, nutrition, mobility, skin integrity, drugs, etc. In stage one of the Checklist assessment process they look at 11 domains, and in stage two, at the full assessment, they add a 12th domain, ‘Other significant care needs’. You can find our more about these domains in the Checklist and the Decision Support Tool documents.

“The social worker insists that my mum will have to pay, because she has a home”

Sadly, many families are told that care funding depends only on a person’s money. This is incorrect and it leads to many thousands of people being wrongly charged for care (and having to sell their home or use life savings to pay for their care) – see above.

“We’ve been told my dad can have a weekly nursing care payment, but not full funding. Why is this?”

The smaller weekly payment is called Funded Nursing Care (FNC). FNC is paid to people in nursing homes who have some nursing needs and is provided by a registered nurse, and yet who are deemed not to meet the criteria for full NHS Continuing Healthcare funding. However, many families report that the FNC payment is often made as a matter of routine without any prior assessment having been carried out for NHS Continuing Healthcare. This is the wrong way round.

“The Continuing Healthcare assessor said that the Coughlan case no longer applies and that we can’t use it to argue our case. Is this true?”

No, the assessor is wrong. The Coughlan case is just as relevant now as it was in the Court of Appeal in 1999. These articles may help:

Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 1. But Pamela Coughlan Is Not Really Eligible For CHC, Is She…?

How relevant is the Coughlan Decision Today?

“We’ve been turned down for Continuing Healthcare and we want to appeal. But how do we actually word the appeal?”

There’s an awful lot involved in putting together a successful appeal, and it’s vitally important to pull together all relevant information about healthcare needs – and to do this with the NHS Continuing Healthcare eligibility criteria in mind. Make sure you’re familiar with the different stages of Continuing Healthcare assessment and appeal and also the National Framework assessment guidelines and funding eligibility criteria. Although this requires a lot of reading and preparatory work, it’s essential if you’re going to be able to make a fist of it and not be overwhelmed by the NHS’s appointed assessors.

In terms of wording an appeal, you need to pull together notes on everything that has been done incorrectly in the assessment process and particularly look at the way the eligibility criteria have been applied. This can be a very time-consuming process if you are going to do the job properly. Don’t forget that you are entitled to seek professional advocacy support at every stage of the assessment and appeal process if y9u need it. Unless you feel totally confident, it is certainly an area where expert help and advice can save you hours/weeks of preparation time, anxiety and stress, and maximise your chances of success. Getting the appeal wrong could cost your relative thousands of pounds a month in unnecessary care fees. There are links to more documents relating to appeals later in this article.

“What do I need to do to prepare for a Continuing Healthcare assessment?”

We could write volumes on this topic alone!

Firstly, you must be familiar with the NHS National Framework guidance and understand how the whole assessment process works. To help get you started, here’s just a small selection of blogs so that you can also learn what to expect. You can find many more on the subject by searching on our Care To Be Different website.

Getting through the Checklist assessment – avoid these common mistakes!

Preparing for the Multi-Disciplinary Team Assessment

Don’t let the Decision Support Tool become a ‘tick box’ exercise

You can also join the conversation on our Facebook page and learn from others who have shared their personal experiences of the assessment process.

“My father has been receiving Continuing Healthcare funding, but now the NHS is threatening to remove it. What can I do?”

CCGs are obligated to carry out reviews of CHC funding initially after 3 months, and thereafter, at least every 12 months. Such reviews are often an anxious time for families due to the fear that they could lead to funding being (wrongly) withdrawn. Good preparation for these reviews is essential. Beware! Annual Reviews can lead to CHC Funded Care being withdrawn. Be sure to provide information on how your relative’s healthcare needs have either stayed the same or increased (if that’s the case). If their needs are the same or greater than when CHC funding was first provided, the assessors will find it difficult to justify removing the funding. Due to the potential risk of an adverse outcome, families often seize this opportunity to seek the comfort of professional guidance and advocacy support.

“My mother has dementia and I don’t have Power of Attorney, and the authorities are refusing to let me be involved in her funding assessments or choice of care.”

This can be difficult. If your relative now lacks the mental capacity to make a Power of Attorney, you may want to apply for a Deputyship Order via the Court of Protection. Although this can take a while to do, and can be costly, it could save you more headaches in the future. Also read  our blog: Why you should consider making Lasting Power of Attorney or a Will

Alternatively, argue that you are entitled to act on your relative’s behalf in their  ‘best interests’. Do you need legal capacity to assist your relative’s claim for NHS funding? Arguing “BEST INTERESTS”.

“My brother has had a memory test and did very badly and we’ve been told this means the care authorities will now make all the decisions about his care. Is this right?”

This is a very common scenario, and we here from many families on this issue. Reports from families show that there is a huge lack of understanding about this amongst health and social care professionals. Many fail to understand the difference between a memory or cognitive test (such as an MMSE or an ACE-R test) and a Mental Capacity Assessment. They are two quite different things. In a nutshell, a Mental Capacity Assessment determines whether a person is able to make a specific decision about a specific thing at a specific time (such as deciding whether they want to go back home from hospital or go into a care home). Read more here: Tackling consent: Keeping control if your relative lacks mental capacity.

“My father is in hospital but needs full time care. He’s being told the hospital needs the bed and he’ll have to pay for a care home. What should we do?”

As a result of to the COVID pandemic, there still remains an ongoing need for the NHS to discharge patients from hospital as quickly as possible in order to free up beds. However, to help facilitate this and cover the cost, the Government has agreed to provide additional emergency COVID discharge funding for up to a maximum of 6 weeks following discharge from hospital.

So, if you relative is being discharged from hospital into a care or nursing home, and requires a new or additional package of care (eg to help with their recovery, support services, rehabilitation and reablement), they are entitled to receive free NHS funding for the first 6 weeks of their care, or until such later date as their long-term care needs have been assessed and the outcome is notified to them?

This emergency COVID discharge funding was due to end on 31st March 2021 but has recently been extended to the end of June 2021. Thereafter, between July and September 2021, the 6 week post-discharge funding will reduce to 4 weeks. We anticipate that it will then be reviewed again in due course towards September this year.

The follow articles will help:

Discharged from hospital to a care home? Is your relative getting their entitlement to 6 weeks’ free care?

Why 31st March 2021 Is A Date To Look Out For?

Things You Need To Check Before Your Relative Is Discharged From Hospital

“My wife has to be turned regularly, she’s doubly incontinent and has to be fed. Surely she’ll be eligible for NHS Continuing Healthcare funding?”

The only way to know if a person is eligible for this is for them to be assessed for NHS Continuing Healthcare. This funding is not dependent on any specific diagnosis, but instead is based on a person’s day-to-day care needs – the whole picture of need.

My Dad Has Dementia – So Will He Automatically Qualify For CHC Funding?

“How do I get the ball rolling for an NHS Continuing Healthcare assessment?”

Read these articles to give you a good start:

Getting the NHS Continuing Healthcare assessment process started.

New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

Understanding the Checklist Assessment

“The NHS assessor said they only provide Continuing Healthcare funding at specific care homes, and we’ll have to move our mother if we want to have any chance of funding.”

This is quite wrong. As long as the care home is able to look after a person, there is generally no reason why NHS Continuing Healthcare funding can’t be paid – assuming, of course, that they meet the eligibility criteria in terms of their healthcare needs. We know of people in top-end care homes who receive fully-funded NHS Continuing Healthcare.

“My sister is in a nursing home and she had an assessment for Continuing Healthcare but didn’t get through. She’s been told she’ll just have to pay the full cost. Is this right?”

Even if a person isn’t eligible for full NHS Continuing Healthcare funding, they may be able to access a weekly nursing care payment-  Funded Nursing Care (FNC) – if they’re in a nursing home. This article outlines more about Funded Nursing Care. A person may also be entitled to Attendance Allowance and other benefits.

“My father got through the Checklist assessment for Continuing Healthcare, so surely he should now receive full funding?”

The Checklist is just the first stage. If a person gets through this, they go on to have a full assessment involving an MDT. Read more about the MDT assessment and what to expect.

“The assessor told us we were not allowed to speak during the assessment, and could not be present for most of it. Is that correct?”

No. Families should be involved and their input should be taken into account. You are entitled to have your say and The National Framework guidelines make this clear.

“I’ve been waiting ages for a decision on my retrospective care fees claim, and I’ve just heard that it’s been thrown out. What can I do?”

Make sure that it’s been reviewed properly and be sure to lodge any appeal within the 6 month time limit stipulated. These tips on retrospective claims will help.

For further reading around appeals, take a look at these helpful articles:

Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision

Know your rights – Appealing the CCG’s refusal to grant CHC funding

An exclusive Q & A interview with an IRP Chair – a rare insight into conducting your appeal and knowing what to expect on the day.

“We’ve only just heard about Continuing Healthcare funding and yet our mother has been in care for several years. What should we do?”

If your relative is already paying care fees, and yet has never been assessed for NHS Continuing Healthcare funding, ask for a Checklist assessment as a matter of urgency. Also ask the NHS Continuing Healthcare team at the local NHS why this hasn’t happened before. You can also ask the care home manager, care provider or a social worker why this hasn’t been done before. In terms of making a retrospective claim, you can generally now claim only as far back as 1st April 2012. However, if you were never told about Continuing Healthcare – or you were not told how to appeal after the funding decision last time – you may have grounds to claim further back. You could argue that the care authorities failed in their duty to provide accurate information. Equally, if you were deliberately misled at the time about care funding, the health and social care employees you dealt with may well have been negligent in their professional duty. Plus, the local authority may have broken the law when it effectively took responsibility for care and asked the person in care to pay (see above).

“I asked for a Continuing Healthcare assessment for my mother but was told it’s not worth it because she wouldn’t get it. Is there anything I can do?”

This is a very common problem, and many families are told ‘not to bother’. However, the ONLY way to know if a person will be eligible for NHS Continuing Healthcare is for them to have an assessment. It’s as simple as that. Here are just some of the things families are told to put them off having a Continuing Healthcare assessment.

“We’ve been told it’s very difficult to get Continuing Healthcare and that the scores our dad needs are almost unattainable. Is it worth it?”

We know of people who have succeeded in getting full NHS Continuing Healthcare funding with relatively low assessment scores, and others with significant needs who have to battle all the way. It can be a postcode lottery. However, the Continuing Healthcare guidelines cover the whole of England, and all assessors should abide by them.

“The care home manager told me that there are people worse than my mum in the care home and they don’t get any funding – so neither will my mum.”

Again, sadly, this is very typical. A Continuing Healthcare assessment is not a comparative exercise. It doesn’t matter what anyone else’s care needs are. If a person has healthcare needs, they should be assessed fairly and robustly, regardless.

“I don’t know if my grandmother has been previously assessed for NHS Continuing Healthcare. How can I find out?”

Contact the NHS Continuing Healthcare team at the local NHS Clinical Commissioning Group and ask them to provide you with paperwork to show when, if ever, your relative was assessed. If you contact the main switchboard of the local CCG and you’re told they don’t have a Continuing Healthcare department, keep persevering! It’s not unusual for main reception staff not to know about Continuing Healthcare. Every local CCG has a Continuing Healthcare team, you just have to have patience to get through to the right people.

“We’ve been asked to pay top-up fees, but this is making life very difficult for us. Do we have to pay them?”

This is a very common question from families, and top-up fees are often controversial. This article will help: Are You Paying Top-Up Fees Unnecessarily?

“The care home doesn’t seem to want to help us get a Continuing Healthcare assessment done. Is there any reason for this?”

It could be due to various things, but unfortunately, sometimes there is also a financial conflict of interest for care homes; they receive more money from residents who pay for themselves (‘self funders’) than they do from the NHS through NHS Continuing Healthcare funding. We’ve heard from some families that care home staff and managers have tried to put people off applying and that staff can be less than helpful in the actual assessment process. Care staff may also not know anything about Continuing Healthcare. To succeed with your relative’s assessment or appeal, make sure the daily care notes are up to date.

“I’ve discovered that my mother was previously assessed (and turned down) for NHS Continuing Healthcare, but I knew nothing about it. What can I do?”

Write to the Continuing Healthcare Department at the local NHS Clinical Commissioning Group with a certified copy of your Power of Attorney (or other form of authority) and request copies of all NHS Continuing Healthcare assessments carried out to date with the full rationale for the funding decisions. Also, state that these assessments should have been carried out with your full knowledge and involvement. You can ask for the assessments to be done again.

‘How To Get The NHS To Pay For Care’ – step-by-step book

Many people find this book (available as an e-book or paperback version) a cost-effective starting point: How To Get The NHS To Pay For Care. It takes you step-by-step through the whole NHS Continuing Healthcare process, right from the start, including how to approach the NHS, what should (and shouldn’t) happen, the pitfalls to avoid, what to do and say before, during and after an assessment, what’s right and what’s not, how to challenge decisions, how to pull apart the NHS’s assessment notes, etc. It gives you a firm understanding of the process and lots of useful and practical information. You’ll find more information about the book here.

We hope these NHS Continuing Healthcare FAQs have answered a lot of your questions. If you still need one-to-one advice though for your specific situation, contact our different Advice helplines and speak to a specialist nurse advisor or case handler; or if you need expert advocacy support with any stage of your assessment or appeal, visit our 1-2-1 Support page.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

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Get Help Breaking Down The Decision Support Tool: An Overview

Analysis

This series of blogs will take an in-depth look at the Decision Support Tool (DST) and its function in the assessment process. By breaking the DST down and considering each of the domains and associated descriptors in detail, we will help you to accurately assess your relative’s “level of need” in each domain of care.

Understanding the Checklist Assessment

Getting through the Checklist assessment – avoid these common mistakes!

You’ve managed to get a Checklist completed, which was difficult enough. The Checklist is “positive”, indicating that a full assessment for CHC funding should be undertaken. You are invited to a Multi-disciplinary Team Meeting ( “MDT”), where, you are informed, representatives from the NHS and Social Services will complete a “Decision Support Tool” before making a recommendation on eligibility for health funding.  This can often be a worrisome time for families, most of whom are not trained clinicians and have never taken part in such an assessment.

Are you preparing for an MDT?  Speak to one of our expert advisors today.

If you are new to the CHC assessment process, the Decision Support Tool, usually referred to as the “DST”, can be a daunting document. Split into eleven “domains of care” and spanning a hundred pages, the DST is used to provide an holistic picture of the individual’s daily care requirements, and aid consistency in applying the primary health need test.

As we considered in our recent three-part series on the subject, the National Framework and DST were drafted in response to the 1999 Court of Appeal Case, R. v. North and East Devon Health Authority, ex parte Coughlan – often referred to as the Coughlan Judgment – and the Court’s comments about the quality and quantity of care that Social Services could be expected to provide.

For more information, read our in-depth series about the 1999 Coughlan Judgement:

The Coughlan Judgment: Part 1 – But Pamela Coughlan Is Not Really Eligible For CHC, Is She?

The Coughlan Judgment: Part 2 – Needs of a “wholly different category”

The Coughlan Judgment: Part 3 – Ancillary and Incidental to the Provision of Accommodation

Eligibility for Continuing Healthcare funding is dependent on the individual’s “primary need”. The DST helps commissioners to answer the questions: Are the majority of the services required, or is the overriding need medical or social in nature? Do the quantity and/or quality of services required exceed those that medically unskilled carers could reasonably be expected to provide?

The Decision Support Tool helps CCGs to assess the degree (quantity and quality) of an individual’s needs in eleven key areas, with a twelfth category for additional needs. As the DST is completed, each of the care domains will be weighted with a “level of need”, which helps the MDT identify the extent of the person’s care requirements in that particular area.

Once the assessors have determined the level of need in each domain, they can then apply the primary health need test – also referred to as the four Key Characteristics of nature, intensity, complexity and unpredictability – and make a recommendation as to eligibility for CHC funding. By using the Decision Support Tool to apply the primary health need test, CCGs should be able to ensure compliance with the National Framework and, crucially, the law.

If you are struggling to understand the relationship between the National Framework and the law, read our detailed article here: 

The DST is broken down into twelve categories of care, as follows:

  1. Breathing
  2. Nutrition
  3. Continence
  4. Skin (including tissue viability)
  5. Mobility
  6. Communication
  7. Psychological & Emotional Needs
  8. Cognition
  9. Behaviour
  10. Drug Therapies & Medications: Symptom Control
  11. Altered States of Consciousness
  12. Other Significant Needs

IMPORTANT – In the vast majority of cases, all the individual’s daily needs will be captured in the first eleven categories and there will be no need to complete the twelfth domain. Don’t worry if the MDT finds no additional needs to consider in the twelfth domain and don’t try to “create” additional needs for the sake of it.

Essential planning and preparation as CHC assessments recommence after 1st September 2020

In every care domain there are a number of “descriptors”, each of which is assigned a level of need, ranging from “no needs” to “priority”. Just to make things extra complicated, not all of the domains carry the same weightings, as this somewhat baffling table on page 93 of the DST demonstrates:

Care Domain P S H M L N
Breathing
Nutrition- Food and Drink
Continence
Skin (including tissue viability)
Mobility
Communication
Psychological and Emotional Needs
Cognition
Behaviour
Drug Therapies and Medication
Altered States of Consciousness
Other significant care needs
Totals

The columns along the top indicate the level of need – “no needs” (N), “low” (L), “moderate” (M), “high” (H), “severe” (S) and “priority” (P) – in each care domain. Perhaps most confusing at a first glance are the blacked-out cells, which denote that the level of need is not applicable to that particular domain.

So, in the domains of Continence, Psychological & Emotional Needs and Communication, the greatest level applicable is “high”. In the domains of Nutrition, Skin, Mobility and Cognition, the highest applicable level is “severe”. In the domain of ASC, a “priority” level of need may be applicable, but there is no descriptor for a “severe” level of need. While this may appear confusing, understanding why certain levels of need are only applicable to some domains can help us to better understand the eligibility criteria.

Paragraph 31 of the DST User Notes confirms that, “a clear recommendation (and decision) of eligibility for NHS Continuing Healthcare would be expected in each of the following cases:

  • A level of priority needs in any one of the four domains that carry this level.
  • A total of two or more incidences of identified severe needs across all care domains.”

Only four domains in the DST carry a weighting of “priority”.  These are: Breathing, Behaviour, Drug Therapies & Medications, and Altered States of Consciousness.

Level of Need PRIORITY

 
Breathing Unable to breathe independently, requires invasive mechanical ventilation.
Behaviour ‘Challenging’ behaviour of a severity and/or frequency and/or unpredictability that presents an immediate and serious risk to self, others or property. The risks are so serious that they require access to an immediate and skilled response at all times for safe care.
Drug Therapies & Medication Has a drug regime that requires daily monitoring by a registered nurse to ensure effective symptom and pain management associated with a rapidly changing and/or deteriorating condition.

OR

Unremitting and overwhelming pain despite all efforts to control pain effectively.
Altered States of Consciousness Coma.

OR

ASC that occur on most days, do not respond to preventative treatment, and result in a severe risk of harm.

In each of these domains, the descriptor for the “priority” level of need makes clear that a failure to meet the needs for any reason would result in an immediate risk to life. In the Breathing domain, the person cannot breathe independently and requires invasive mechanical ventilation. In the Behaviour domain, the person’s behaviour presents a risk of life-threatening injury, or even death, either to themselves or those living with or caring for them. In the Drug Therapies & Medications domain, the person is in unremitting or constant pain, and/or has a rapidly changing or deteriorating condition, often associated with the administration of anticipatory (end of life) medications. In the Altered States of Consciousness domain, the patient is in a coma or suffering daily, life threatening seizures which do not respond to treatment. The descriptor for a “priority” level of need in each case makes it easy to understand why such an individual would automatically qualify for 100% health funding due to the nature, intensity, complexity and/or unpredictability of their needs in this one domain of care. Indeed, such a patient would often be treated in a hospital or other NHS setting.

Understanding the four Key Characteristics

Looking at the Key Characteristics from the NHS’s perspective

Six care domains carry a weighting of “severe”. These are: Nutrition, Skin, Mobility, Cognition, Behaviour and Drug Therapies & Medications.

Level of Need SEVERE

 
Nutrition Unable to take food and drink by mouth. All nutritional requirements taken by artificial means requiring on-going skilled professional intervention or monitoring over a 24 hour period to ensure nutrition/hydration, for example I.V. fluids/total parenteral nutrition (TPN).

OR

Unable to take food and drink by mouth, intervention inappropriate or impossible.
Skin Open wound(s), pressure ulcer(s) with ‘full thickness skin loss involving damage

or necrosis to subcutaneous tissue, but not extending to underlying bone, tendon or joint capsule’ which are not responding to treatment and require regular monitoring/reassessment.

OR

Open wound(s), pressure ulcer(s) with ‘full thickness skin loss with extensive

destruction and tissue necrosis extending to underlying bone, tendon or joint capsule’ or above

OR

Multiple wounds which are not responding to treatment.
Mobility Completely immobile and/or clinical condition such that, in either case, on movement or transfer there is a high risk of serious physical harm and where the positioning is critical.
Cognition Cognitive impairment that may, for example, include, marked short or long-term memory issues, or severe disorientation to time, place or person.

The individual is unable to assess basic risks even with supervision, prompting or assistance, and is dependent on others to anticipate their basic needs and to protect them from harm, neglect or health deterioration.
Behaviour ‘Challenging’ behaviour of severity and/or frequency that poses a significant risk to self, others or property. The risk assessment identifies that the behaviour(s) require(s) a prompt and skilled response that might be outside the range of planned interventions.
Drug Therapies & Medication Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for this task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. Even with such monitoring the condition is usually problematic to manage.

OR

Severe recurrent or constant pain which is not responding to treatment.

OR

Non-compliance with medication, placing them at severe risk of relapse.

A person with two or more “severe” levels of need in the above domains will meet the complexity characteristic due to the way their needs interact, and/or the intensity characteristic owing to the amount of skill required to meet their daily care requirements, and/or their need for sustained care throughout the 24-hour period.

It is not difficult to grasp why a person presenting with two or more of the needs described above would require 24-hour, skilled care and thus qualify for CHC funding.

When preparing for your MDT, it is crucial to remember that in all other cases, regardless of the assessed levels of need, eligibility cannot be decided without first analysing the four Key Characteristics of nature, intensity, complexity and unpredictability. The presence of one or more of these criteria is what determines eligibility for CHC, nothing else.

REMEMBER – The assessed levels of need quantify the degree of the needs. The primary health need test analyses the quality and quantity of interventions required to meet the assessed needs.

In our experience, families often place far too much emphasis on the levels of need, spending too little time considering the Key Characteristics and mistakenly believing that a certain combination of “moderate” and “high” levels of need will lead to a finding of eligibility. Don’t make this mistake! Keep reading this series to ensure focus on the most important aspects of your relative’s needs.

If you need help analysing the CCG’s DST and how to respond, preparing your own DST, what happens next in the assessment process, or just want to speak to an advisor or need expert advocacy support at your MDT, get in touch. 

Visit our Care To Be Different website for lots more free information to help with your MDT.

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5 Myths About Continuing Healthcare Funding

Here are 5 common myths about Continuing Healthcare Funding:

1. ‘I have been told that You have to be at death’s door to receive it’

We wish we had a pound for every time someone has said this to us! It is not true that you have to be but, of course, if you are, then you are likely to qualify for Fast Track funding if you are not expected to live longer than 12 weeks. However, there are many thousands of people who are in receipt of CHC funding and then go on to receive it for several years.

2. ‘I have been told that there is no point in applying for this funding because the NHS in my area are so short of money that they don’t ever grant the funding to anyone’

This is total nonsense! If you qualify for NHS CHC funding, then the NHS is legally obliged to provide it – ‘free at the point of delivery’ in accordance with the NHS Constitution. Don’t be fobbed off.

3. ‘I have been told that there is no point even being assessed for this funding because my father will never qualify for it’

Nonsense – if you are being discharged from hospital into long term care, then you are entitled to be assessed for CHC funding, and at least the first stage of the process – the Checklist assessment – should be carried out once discharged from hospital. You are, of course, entitled to request a CHC assessment even if you are transferring into long-term care from your own home.

4. ‘You have to be in a Nursing Home to qualify’

The setting of the care is irrelevant to whether or not you qualify for CHC funding. It is true that the likelihood of qualifying is higher if you are in a nursing home (rather than a residential home) by virtue of the fact that you have higher levels of need that require the input of a nurse. But it is not a bar to qualifying if you are not in a nursing home.

5. Are you still able to apply for NHS CHC Funding if you have savings and own a house?

Yes! This is one of the most commonly held misapprehensions about NHS Continuing Healthcare Funding. The assessment of eligibility is based on your health care needs and the care which is required to manage those needs and has nothing to do with your personal wealth or finances. A financial assessment should only be requested by the local authority once the issue of eligibility for NHS Continuing Healthcare funding has been considered.

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Why is CHC always overlooked? Help spread the word…

Happy female radio host using computer while broadcasting in studio

We often hear radio chat shows where callers are invited to talk about the cost of care in a care home, how expensive it is and their experiences of placing a relative into care. There is usually plenty of discussion about social care funding and means-testing, but hardly anyone ever mentions NHS Continuing Healthcare Funding – free funded care provided by the NHS!

Unfortunately, some callers who raise the topic are often unable to articulate exactly what CHC is, how you apply for it and what the eligibility criteria are for funding.

Equally, it is quite clear and maddingly frustrating to hear how many radio presenters who have broached the subject haven’t even heard of NHS Continuing Healthcare Funding either! The conversation usually proceeds with callers (and the show presenter) blissfully unaware that individuals can get their care fees paid in full (100%) – free of charge by the NHS  – if they meet the eligibility criteria. The conversation needs to change and callers (and presenters) need to be educated on people’s rights to NHS Continuing Healthcare Funding.

Here’s a quick run through for those new to the subject (and any radio presenters reading this article):

1) What is NHS Continuing Healthcare Funding (‘CHC’)?

CHC is a package of ongoing care arranged and funded by the NHS for anyone over the age of 18 who has a ‘primary health need’ ie the overriding reason for their care is due to health needs – usually arising as a result of disability, accident or illness.

CHC is NOT means-tested and is paid irrespective of wealth. An individual’s wealth is never a consideration. You should never be asked if you can afford to self-fund your own care until you have had an assessment for CHC Funding first.

Quite simply, if you meet the eligibility criteria (and make no mistake, the bar is set high), you are entitled to CHC Funded care ie 100% of your care fees (including accommodation in a care facility) paid in full by the NHS – not the Local Authority.

Don’t make the mistake of confusing CHC with social care needs! There is a dividing line between care that the NHS must pay for and care that is the responsibility of a Local Authority. Local Authority funding is for social care needs and covers things like help with washing, dressing, eating, drinking, moving around safely and toileting etc.

Social care IS means-tested, and if, you have saving or assets over the threshold (currently £23,250) you will have to pay for your own care.

Read our blog: Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs

2) How do I apply for CHC?

If your relative is being discharged from hospital into a care home setting and requires funding and support for a new or additional package of care, the hospital discharge team co-ordinator should arrange an assessment for CHC. Otherwise, simply ask your GP, social worker, other care professional or the care home manager to arrange it. Or just approach the NHS Continuing Care Team manager at your local Clinical Commissioning Group (CCG), directly.

Read our blog: Why 31st March 2021 Is A Date To Look Out For…

3) Do I have to pay for an assessment?

The simple answer is ‘No’. The assessment (and appeal) process is free to use and you should not be charged by the CCG at any stage.

4) What does CHC pay for?

CHC Funding covers the full cost of an individual’s healthcare needs, including their social care needs AND the cost of their accommodation. So, if your relative is a resident in a care/nursing home, hospice or other care facility – ALL their healthcare needs should be paid for in FULL by the NHS and they should not be asked to contribute in any way.

But beware! Some care homes charge families unlawful top-up fees to meet to shortfall in the cost of care arranged by the CCG.

Read our blog: Have you been coerced into paying unlawful care home top-up fees?

5) Does CHC apply regardless of where I live?

Yes. CHC is assessed locally to where you live and funding is available throughout England and Wales.

However, some CCGs are known to award CHC more willingly than others, much depending on where you live – often referred to as the ‘postcode lottery’.

Read our blog: Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’

6) Do I have to be in a care home to get CHC?

No! CHC has no relevance to the setting where the care is provided. Therefore, if your relative is eligible for CHC Funded care, they can get it at their own home, a care home or wherever they are living.

7) How long does CHC last for?

For people being discharged from hospital into a care home, emergency COVID discharge funding (not CHC!) is automatically awarded for the first 6 weeks of care; it continues thereafter until an assessment for CHC has taken place and the outcome decision notified to you.

An individual’s healthcare needs can fluctuate over time and proactive CCGs recognise that it is useful to take stock periodically and make sure that the package of care in place is still sufficient to meet the individual’s needs.

Indeed, the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018) provides that CHC care packages should be initially reviewed at 3 months once awarded and thereafter at least every 12 months (although the National Framework states that “some individuals will require more frequent review in line with clinical judgement and changing needs”). Of course, in the current COVID pandemic, most CCGs were unable to undertake any reviews between 19th March and 31 August 2020. However, from 1st September 2020 the Government mandated that it was back to business as usual, and annual reviews should be re-activated. Most competent CCGs will have the reviews diarised, as there is no point using up their limited budgets for individuals who no longer qualify for CHC.

Read our blog: Are you ready for 1st September 2020? CHC Funding Gets Back to Business

8) Can CHC be withdrawn and taken away?

Annual reviews can be a double-edged sword. That means that the care package in situ can remain at the same level or it can be increased as necessary, to meet the individual’s more challenging needs. However, if their needs no longer exist or have significantly reduced, then the matter can be referred back to the CCG to carry out a formal reassessment, and the risk that their CHC package will be withdrawn. For further information, read these helpful blogs:

Can CCGs Use Annual Reviews to Ration Care Funding?

Should you pay care fees if your NHS Continuing Healthcare Funding is refused or withdrawn?

9) Can I appeal if CHC is withdrawn?

Yes. If CHC Funding is withdrawn, you will be advised of the appeal process and have 6 months to lodge your appeal with the CCG. You must have substantive grounds for making your appeal. In the meantime, your relative may be required to pay for their own care out of private funds. That is why annual reviews can cause sleepless nights for families – especially if their relative’s needs are borderline CHC/social care.

Read our blog: Know your rights – Appealing the CCG’s refusal to grant CHC funding

10) What if I’ve already paid fees, can I get them back?

If your relative has already paid for care fees (wrongly) and believe that they should have been eligible for CHC Funding during that period of care, then they can make a retrospective claim against the CCG for reimbursement. If successful, the NHS Redress Guidance provides that the CCG are obliged to repay the care fees wrongly paid plus interest.

Read our blog: Retrospective Reviews for past periods of care – avoiding fatal mistakes

11) Where can I find out more about CHC?

The guidance for NHS Continuing Healthcare is set out in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (revised October 2018).

However, if you are reading this article, you’ve come to the right place! Our caretobedifferent website is a comprehensive information resource for NHS Continuing Healthcare, and most of it is free to browse. The information we publish tells you what actually happens in care funding assessments and the pitfalls to watch out for – it’s not just the theory. Not sure where to start? Here’s a good place.

You can also get our book “How To Get The NHS To Pay For Care” which could help save you thousands of pounds in care fees.

If talking through your own care situation on the phone helps you find a clearer way forward and gives you greater confidence, then contact our Nurse Advice Line for one-to-one advice about care fees and NHS Continuing Healthcare.

If you would like to speak to one of our experienced Case Managers about a CHC related issue regarding a forthcoming assessment for CHC or a potential appeal against a decision not to grant or to withdraw Funding, or have a complicated CHC procedural issue which you would like to discuss, contact our General Advice Line.

If you want professional support at any stage of your relative’s assessment, appeal or retrospective claim, you can access it here too.

In summary:

Tell people the basics!

If your radio station goes on about social care needs without ever mentioning CHC, phone in and tell them that they should get educated about CHC first before their listeners part with a penny!

When a relative first needs care, there’s often little time to figure out how things are supposed to work. So, if you have friends or contacts with elderly relatives, tell them the basics – and tell people about NHS Continuing Healthcare! Be prepared for them not to believe that NHS care funding has nothing to do with a person’s own money. Like many of us, they may have been conditioned to believe they have to pay because they have savings and/or a house.

The more we can spread the word about NHS Continuing Healthcare, the more chance ‘mistakes’ will be avoided. Do what you can to dispel the myths about paying for care.

For more reading around the subject take a look at this small selection of blogs from our website.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our Contact Us page with the subject “blog request” or mention in the comments below and we’ll do our best to cover your suggested topic.

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Do you know the difference between the National Framework and the Standing Rules?

happy senior mother and adult daughter rest on sofa

Care to be Different are here to answer your questions! We are always happy to receive requests for articles from our insightful readers. This week, we take a look at how the Continuing Healthcare National Framework interacts with the law, in response to this question from one of our readers:

“Dear Care to be Different, it would be really helpful if you could shed some light on the link between the National Framework, the CCG Standing Rules and the legal limit of a local authority referenced in section 21(7) of the Standing Rules (legislation).” 

If you are engaged in the assessment and/or appeal process for NHS Continuing Healthcare funding, for yourself or on behalf of a relative you will likely be familiar with the National Framework for NHS Continuing Healthcare Funding and NHS Funded Nursing Care (“the National Framework”).

Currently in its third version (2007, 2012, 2018), the National Framework provides guidance to Clinical Commissioning Groups (CCGs) – the local NHS body responsible for medical services in your area – to ensure compliance with the law when assessing individuals for ongoing NHS funding in the community (CHC).

As we considered in our recent three-part series on the subject, the National Framework and Decision Support Tool were drafted in response to the 1999 Court of Appeal Case, R. v. North and East Devon Health Authority, ex parte Coughlan – often referred to as the Coughlan Judgment – and the Court’s comments about the quality and quantity of care that Social Services could be expected to provide.

For more information, read our in-depth series about the 1999 Coughlan Judgment:

The Coughlan Judgment: Part 1 – But Pamela Coughlan is not really eligible for CHC is she?

The Coughlan Judgment: Part 2 – Needs of a wholly different category

The Coughlan Judgment: Part 3 – Ancillary and incidental to the provision of accommodation

As many a frustrated CHC applicant will have discovered, the National Framework is only guidance and is not legally-binding.  However, local commissioners (health and social care) are required to “have regard” to the National Framework, as failure to do so may result in them breaking the law.

Paragraphs 6 and 7 of the Executive Summary of the National Framework explain the interplay between guidance and legislation:

“This National Framework is underpinned by Standing Rules Regulations (2), issued under the National Health Service Act 2006 (1). These regulations, referred to henceforth as the Standing Rules, require Clinical Commissioning Groups (CCGs) to have regard to the National Framework.

This revised National Framework takes account of legislative changes brought about by the Care Act 2014 (3), which preserves the existing boundary and limits of local authority responsibility in relation to the provision of nursing and/or healthcare.”

The Executive Summary refers to three pieces of legislation, all of which underpin the provisions of the National Framework:

  1. National Health Service Act 2006
  1. The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012
  1. Care Act 2014

The Health Act 2006 is a wide-ranging Act of Parliament, which, as well as banning smoking in public places, includes provisions about the recovery of National Health Service costs in England and Wales. The National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) Regulations 2012, typically referred to as the “Standing Rules”, came into force in April 2013. The Standing Rules, drafted by the then Health Secretary under powers conferred by the Health Acts of 2006 and 2012, offer specific guidance to local commissioners about the provision of medical services.

The Care Act 2014 intended to improve the delivery of social care services and the working of the adult social care system, by bringing together several separate pieces of health and social care legislation. Importantly, the Care Act attempts to define the “lawful limit” of a Local Authority when meeting the needs of individuals in the community. All three texts help to define the lawful division between health and social care.

REMEMBER – The provisions of the National Framework are not legally-binding, but “having regard” to them will ensure CCGs comply with the legislation referred to in the Executive Summary.

The Standing Rules

Standing Rules Regulations, 21.7: Duty of relevant bodies: assessment and provision of NHS Continuing Healthcare – sets out the general conditions under which an individual may qualify for fully funded NHS care in the community (CHC). Essentially, this section of the regulations repeats the Court of Appeal’s statement in the Coughlan Judgment about the type of community care local NHS commissioners are expected to fund:

“In deciding whether a person has a primary health need in accordance with paragraph (5)(b), a relevant body must consider whether the nursing or other health services required by that person are—

(a) where that person is, or is to be, accommodated in relevant premises, more than incidental or ancillary to the provision of accommodation which a social services authority is, or would be but for a person’s means, under a duty to provide; or

(b) of a nature beyond which a social services authority whose primary responsibility is to provide social services could be expected to provide, and, if it decides that the nursing or other health services required do, when considered in their totality, fall within sub-paragraph (a) or (b), it must decide that that person has a primary health need.”

Eligibility for Continuing Healthcare funding is dependent on the individual’s “primary need”.  I.e., are the majority of the services required, or is the overriding need, medical or social in nature? Do the quantity and/or quality of services required exceed those which could reasonably be expected to be provided by medically unskilled carers?

While the Court of Appeal’s statements offer some guidance about the criteria for determining a primary need for healthcare, in practice they were difficult to apply and open to interpretation. Stark differences in the application of the “primary health need test” around the country highlighted the need for a nationally defined set of criteria, against which all applicants could be considered fairly. The introduction of the National Framework (guidance) and Decision Support Tool (assessment tool) in 2007 intended to streamline the CHC assessment process and ensure fair and consistent decision-making, regardless of locality.

The Decision Support Tool helps CCGs to assess the degree (quantity) of a person’s needs in 11 key areas, with a 12th category for additional needs. The primary health needs test – also referred to as the four Key Characteristics of nature, intensity, complexity and unpredictability – assists CCGs in analysing the type of services (quality) required to meet the individual’s assessed needs. By using the Decision Support Tool to apply the primary health need test, CCGs should be able to ensure compliance with the Coughlan Judgment, the Health Act and the Standing Rules.

The National Framework sets out the recommended process by which decisions on eligibility for CHC funding should be reached. While the Framework holds no legislative power in and of itself, failure to comply with its provisions may result in a CCG breaking one or more of the laws by which it is underpinned.

The Care Act 2014

While the Health Act and Standing Rules were aimed at health authorities (then PCTs, now CCGs), the Care Act 2014 is concerned with Social Services. Crucially, the Care Act attempts to define the type of services a Local Authority can reasonably be expected to provide, with reference to the Coughlan Judgment. In so doing, the Act clarifies the limits of Local Authority responsibility in relation to the provision of nursing and/or healthcare in the community.

Part 1, Section 1.1-2 of the Care Act outlines the general responsibilities of the Local Authority in promoting individual well-being:

“1. Promoting individual well-being

(1) The general duty of a local authority, in exercising a function under this Part in the case of an individual, is to promote that individual’s well-being.

(2) “Well-being”, in relation to an individual, means that individual’s well-being so far as relating to any of the following—

(a) personal dignity (including treatment of the individual with respect);

(b) physical and mental health and emotional well-being;

(c) protection from abuse and neglect;

(d) control by the individual over day-to-day life (including over care and support, or support, provided to the individual and the way in which it is provided);

(e) participation in work, education, training or recreation;

(f) social and economic well-being;

(g) domestic, family and personal relationships;

(h) suitability of living accommodation;

(i) the individual’s contribution to society.”

Any of the needs listed above are considered within the lawful remit of the Local Authority to meet and would not be indicative of a need for healthcare. Where Continuing Healthcare funding assessments are concerned, the needs described at subsections 2. a), b) and c) are the most hotly debated.

The vast majority of individuals who receive 24-hour care in a residential setting will require full or partial assistance to meet some or all of the needs described above. When they are assessed and found not to meet the criteria for CHC funding, the CCG will use interpretations of the above legislation to support its decision.

The requirement for 24-hour care in a residential or nursing home – to include assistance with, or full provision of, washing, dressing, eating, drinking, moving around safely, going to the toilet, maintaining skin health, treating minor injuries and taking prescribed medications – would be considered merely ancillary and incidental to the provision of accommodation, because the needs fall under the categories described under subsection 2, a), b) and c), above. A person who is cognitively impaired is also likely to require full or partial assistance to meet the needs described under subsection 2, e) through h).

Part 1, Section 22 of the Care Act addresses certain exceptions whereby the Local Authority would be responsible for the provision of health services in the community. This section of the Act is crucial to considerations for CHC funding and is specifically referenced in the Executive Summary of the National Framework as a footnote.

Part 1, Section 22.1: Exception for provision of health services – repeats the Court of Appeal’s statements in the Coughlan Judgment about the quality and quantity of required services, outlining those circumstances in which the Local Authority would reasonably be expected to provide health services as part of a package of care:

“(1) A local authority may not meet needs under sections 18 to 20 by providing or arranging for the provision of a service or facility that is required to be provided under the National Health Service Act 2006 unless—

(a) doing so would be merely incidental or ancillary to doing something else to meet needs under those sections, and

(b) the service or facility in question would be of a nature that the local authority could be expected to provide.”

Part 1, Section 22.3-4: Exception for provision of health services – reminds the Local Authority that it cannot ordinarily provide nursing care or arrange for its provision in the community (e.g. care by a District Nurse).  Subsection 4, however, describes the particular circumstances whereby the Local Authority may be expected to provide nursing services as part of an ongoing package of care:

“(3) A local authority may not meet needs under sections 18 to 20 by providing or arranging for the provision of nursing care by a registered nurse.

(4) But a local authority may, despite the prohibitions in subsections (1) and (3), arrange for the provision of accommodation together with the provision of nursing care by a registered nurse if—

(a) the authority has obtained consent for it to arrange for the provision of the nursing care from whichever clinical commissioning group regulations require, or

(b) the case is urgent and the arrangements for accommodation are only temporary.”

The completion of the Decision Support Tool by a Multi-Disciplinary Team (MDT) of health and social care professionals, in accordance with the process outlined in the National Framework, determines the individual’s primary need (health or social care) and, therefore, responsibility for the provision of services (CCG or Local Authority). Once an individual is found not to meet the criteria for CHC funding, the requirement at section 22.4 a), for the Local Authority to obtain consent from the relevant CCG to deliver nursing care, has been met. The Local Authority can thus lawfully provide nursing services as part of an ongoing package of care and the individual receiving that care can be means-tested to assess their financial contribution.

Part 1, Section 22.5-6: Exception for provision of health services – if an individual has been placed in a care setting by Social Services, subsection 5 reminds the Local Authority of its obligation to seek the CCG’s assessment as to the primary need and thus responsibility for service provision, as soon as is reasonably possible.  Subsection 6 determines that the Local Authority must engage with such assessments as required and have a policy for resolving disagreements about the responsible commissioner with the CCG.

“(5) In a case to which subsection (4)(b) applies, as soon as is feasible after the temporary arrangements are made, the local authority must seek to obtain the consent mentioned in subsection (4)(a).

(6) Regulations may require a local authority—

(a) to be involved in the specified manner in processes for assessing a person’s needs for health care and for deciding how those needs should be met;

(b) to make arrangements for determining disputes between the authority and a clinical commissioning group or the National Health Service Commissioning Board about whether or not a service or facility is required to be provided under the National Health Service Act 2006.”

Part 1, Section 22.8: Exception for provision of health services – gives further clarification as to when nursing services may be provided by a Local Authority, once an individual has been placed in a care setting:

“(8) A reference to the provision of nursing care by a registered nurse is a reference to the provision by a registered nurse of a service involving—

(a) the provision of care, or

(b) the planning, supervision or delegation of the provision of care,

other than a service which, having regard to its nature and the circumstances in which it is provided, does not need to be provided by a registered nurse.”

So, if the nursing services provided could otherwise be delivered by a medically unskilled carer, and are only provided by a nurse because, for example, the person resides in a nursing home, then those services can be included in a social care package which can be means-tested. This section of the Care Act is routinely relied upon by CCGs to deny CHC funding to residents of nursing homes, many of whom will require provision, and/or planning, supervision or delegation, of care by a registered nurse.

Quick Take Away: Guidance vs. Legislation

  • In deciding whether care services are to be provided by the NHS or Local Authority, the CCG/Social Services must comply with the 2006 Health Act, 2012 Standing Rules and 2014 Care Act, all of which refer to the findings of the Court of Appeal in the 1999 Coughlan Judgment.
  • The National Framework and Decision Support Tool have been drafted to help health and social care commissioners comply with the above legislation when determining responsibility for the provision of health services in the community.
  • The National Framework sets out the recommended assessment and appeals’ process for CCGs to follow when making decisions about CHC funding.
  • The Decision Support Tool aids consistency and fairness of decision making when applying the primary health need test.
  • While the National Framework is not legally binding, the Standing Rules are.
  • The Standing Rules require CCGs to “have regard to” the guidance in the National Framework when determining the responsible commissioner and resolving disputes. Failure to do so may result in both authorities breaking one or all of the laws underpinning the National Framework, referred to in the Executive Summary (para. 6-7).

Thanks again to our website Reader for your contribution. We hope this answered your question. If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our Contact Us page with the subject “blog request” and we’ll do our best to cover your suggested topic.

Remember: If  you need help understanding the National Framework , or want professional help or advocacy support with your assessment, or just need advice about the prospects of your case, visit our 1-2-1 support page.

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Why 31st March 2021 Is A Date To Look Out For?

Home health care worker and an elderly couple

Is your relative getting their entitlement to 6 weeks’ FREE funded care?

“A couple of weeks ago my Mum was discharged from hospital to a care home. At no time did anybody mention the 6 weeks’ free care. Is it too late to claim it back now?”

  • Did you know that if your spouse, relative, friend or person you care for has been discharged from hospital into a care home or other care facility since 1st September 2020 they may be entitled to (at least) the first 6 weeks’ care free of charge?
  • If your relative been paying for their care unnecessarily during this period, did you know they could be entitled to a full refund?

These are just some of the issues this blog will address.

COVID Discharge Funding Scheme:

As a result of the ongoing COVID pandemic, the Government put in place emergency funding to help individuals being discharged from hospital into a care home setting, who require funding and support for new or additional packages of care, to help with their recovery and rehabilitation.

Nb: If you already have an existing package of care in place then that will resume upon discharge from hospital if it continues to meet the individual’s needs.

Start date:

The emergency funding pot was made available from 1st September 2020.

How long is the Discharge Funding available?

This free emergency funding is available for the first 6 weeks, but can be extended – see below.

Government’s motive:

To help speed up hospital discharge and free up beds for new COVID cases.

To promote recovery and independence until a formal assessment of the individual’s long-term care needs can be carried out.

Incentive to patients:

To make available funding for the initial 6 weeks’ care – free of charge, thereby alleviating the financial stress and burden of worrying how to fund their relative’s initial care placement.

End date:

The Government has announced that this emergency funding is set to end on 31st March 2021 (see paragraph 10.13 NHS Hospital Discharge Policy).What next?

It is expected that new arrangements or an extension will be announced shortly, possibly extending the scheme to at least the end of June 2021 and even into September, to be followed by a further review.

Why 6 weeks?

This is to enable the local NHS Clinical Commissioning Group (CCG) to carry out an assessment of the individual’s long-term care needs and to determine how their care should be paid for.

If upon assessment, the individual is eligible for NHS Continuing Healthcare Funding (CHC), then the CCG will pay for all their assessed healthcare and social care needs, plus their accommodation, in full, FREE of charge.

The CCG are mandated to carry our their assessment AND provide their decision as to eligibility for CHC within this 6 week period following discharge from hospital.

What happens after 6 weeks?

The COVID emergency discharge funding stops.

If no decision has been made and notified to the individual (or their representatives) then the local CCG is obliged to continue paying the care fees until that stage has been reached.

If the CCG are slow to carry out the assessment and communicate their decision promptly, then they will have to absorb the ongoing cost of the individual’s care from their own budget after the initial 6 week period. So, you can see that there is clearly a huge financial incentive for CCGs to assess patients and reach a decision quickly. Otherwise, they’ll have to foot the bill for the ongoing care package from their own pockets (or involve the Local Authority to agree a funding strategy until they have complied).

The good and the bad:

The good news is that following discharge from hospital, if your relative lives in an area with a pro-active and efficient CCG, they can expect a relatively quick decision as to eligibility for CHC (free package of care). If the outcome decision is positive, this will be enormously helpful, give families peace of mind and relieve the huge financial burden of having to pay ongoing care fees until formal reassessment takes place.

The risk, of course, is that with so many people being ejected from hospital into care quickly, there is a mounting pressure on CCGs to cope and undertake assessments within the initial 6-week period. Unfortunately, with under-resourcing, appointed CCG assessors could be rushed into an incorrect decision which wrongfully denies the patient of their legitimate right to free NHS CHC Funded care; or conversely, paying for care for those individuals who aren’t in fact eligible at all.

If your relative is not found eligible for CHC upon assessment, then they will be passed over to their Local Authority for means-tested care, and if they have assets, savings or capital over £23,250, will end up paying for their own care (self-funding).

Don’t miss out!

31st March 2021 is fast approaching. If your relative is about to be discharged into care and needs a new or additional package of care, make sure they get their entitlement to 6-weeks’ free funded care.

Emotionally overwhelmed by the realisation that their spouse or relative will not be able to return home after an accident, serious illness, disability or progressive medical condition, then comes the need to find them a suitable caring environment and answers as to how their daily care will be funded. Many families just assume they have to pay for care if their relative has means. Don’t fall into this trap!

We are hearing numerous stories from families reporting that they weren’t told or even aware this free emergency discharge funding was available and their relative has been paying privately for their care quite unnecessarily during the first 6 weeks and beyond. Some are still awaiting an assessment weeks later but are continuing to pay privately. Sometimes this can be an eye-watering £1,000 to £1,500 a week from private means!

We find it staggering that hospital co-ordinator discharge/ teams are not routinely mentioning this pot of available COVID funding to help families upon discharge.

If your relative is about to be discharged from hospital, speak to the discharge co-ordinator and find out more about your rights to free-funded care.

Too many people are self-funding their own care quite unnecessarily!

TIP: Don’t pay for care until your relative has had an assessment for CHC Funding!

If the family have means to pay, the care home manager may omit to mention the availability of COVID emergency discharge funding for the first 6 weeks of care, and some may be quite happy to relieve the family of private funds. This is wrong and in breach of the Government guidance.

Beware! Some care homes just don’t understand the Government guidance or deliberately choose to ignore it. For example, we have heard from one family whose care home manager threatened to evict their elderly, frail parent after the initial 6 weeks’ emergency funding period, if the family didn’t pay the invoices from then onwards! The manager apparently hadn’t realised that COVID emergency funding continues beyond the 6 weeks until the formal CHC assessment has taken place and the outcome decision communicated.

Common misunderstanding – Even some Local Authorities are getting it wrong, too! We have heard of one Local Authority who told a family that their relative will automatically have to self-fund as soon as the 6-week discharge funding comes an end. This is incorrect and must be challenged immediately if this happens to your relative. As above, after the initial 6 week period, the CCG (in conjunction with the Local Authority, as appropriate) must take over responsibility for funding ongoing care until the assessment has been undertaken and outcome notified.

Moving between CCGs?

Be alert! It can happen that upon discharge from hospital, a patient may move between Clinical Commissioning Groups and fall between two stools, with neither discharge team mentioning the availability of COVID discharge emergency funding.

Getting a refund:

A family recently attended an assessment for their relative’s eligibility for CHC and were shocked to learn that COVID emergency discharge funding could have been made available to fund, not only their relative’s first 6 weeks of care following discharge from hospital – but way beyond – as assessment took place many weeks later! They have been told that the CCG will look into making a refund (plus interest, we hope) until they are notified of the outcome decision post-assessment. Of course, if the decision is positive, the CCG will continue to pay for their relative’s care package in full.

Summary:

Where applicable, ensure that your relative is receiving COVID emergency discharge funding. Remember, at present it only applies to patients being discharged from hospital into care who need a new or additional package of care. If you have been paying care fees in the meantime, request a full refund until the assessment and outcome decision is notified to you. Until then, don’t assume your relative will be expected to pay for their own care.

For further reading around the subject:

Discharged from hospital to a care home? Is your relative getting their entitlement to 6 weeks’ free care?

https://www.gov.uk/government/publications/reintroduction-of-nhs-continuing-healthcare/reintroduction-of-nhs-continuing-healthcare-nhs-chc-guidance

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/962885/Hospital_Discharge_Policy_1.pdf

If  you need professional help or advocacy support with your assessment or just want advice about the prospects of your case, visit our 1-2-1 support page.

If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “Contact Us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

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Part 3: Pamela Coughlan – Ancillary and Incidental to the Provision of Accommodation

Law cases and law books on a shelf

Pamela Coughlan – This series of blogs takes a closer look at the Coughlan judgment, its implications for long-term care in the community and how an understanding of the clinical facts of the case can assist you in your fight for CHC funding. In today’s blog, we consider the intensity, complexity and unpredictability of Ms. Coughlan’s needs, having examined the nature of her needs in Part 2. If you haven’t read Parts 1 and 2, make sure you catch up below!

Part 1: But Pamela Coughlan is Not Really Eligible for CHC, is She …?

Part 2: Pamela Coughlan – Needs of a “Wholly Different Category”

Despite being handed down over two decades ago, the findings of the Court of Appeal in Ms. Coughlan’s landmark case against North and East Devon Health Authority remain fundamental to the eligibility criteria for CHC Funding to this day.

Read our blog How Relevant is the Coughlan Decision Today? for more information.

Of particular importance was the Court’s attempt to define the legal division between the Local Authority (County Council) and Health Authority (NHS) in respect of delivering care in the community. Only services that were merely ancillary and incidental to the provision of accommodation, and of a nature that Social Services could be expected to provide, could be delivered by the Local Authority and therefore means-tested. 

In the years following the Coughlan judgment, Health Authorities struggled to put the Court’s ambiguous statements into practice. A lack of nationally defined eligibility criteria resulted in a ‘postcode lottery’, with some local Commissioners being far more likely to find evidence of a primary health need than others.

Many people suggest the “postcode lottery” continues to this day.  For further reading on the subject:

Rationing NHS Continuing Healthcare Funding – The ‘NHS’s Best Kept Secret’

Concerns about a lack of fairness and consistency led to the publication of the National Framework for NHS Continuing Healthcare Funding and Funded Nursing Care in 2007 (updated 2012 and 2018), providing guidance to the then Primary Care Trusts (now Clinical Commissioning Groups) about the assessment process and eligibility criteria. The primary health need test introduced a set of four criteria – Nature, Intensity, Complexity and Unpredictability – intended to answer the questions posed by the Court of Appeal:

  • Are the services required by the individual of a nature (type) that Social Services could reasonably be expected to meet? (Nature)
  • Are the services provided to the individual merely ancillary and incidental to their need for accommodation? (Intensity, Complexity, Unpredictability)

If any one of these criteria are met, the individual’s primary need must be for health, and not social, care – i.e. of a type (nature) that Social Services could not be expected to provide, and/or over and above the provision of accommodation (intense, complex, unpredictable).  The Checklist and Decision Support Tool were developed to assist Commissioners in applying the eligibility criteria consistently.

Find out more about the Checklist assessment here!

Avoid common mistakes and ensure your relative makes it through the Checklist to full assessment.

Don’t let the DST for your relative become a tick-box exercise!

Part two of this series, Needs of a “Wholly Different Category”, examined the nature of Ms. Coughlan’s needs and the type of services required to meet them. Today we shall apply the Intensity, Complexity and Unpredictability criteria to the evidence gathered, to see whether Ms. Coughlan’s needs can be described as merely ancillary and incidental to the provision of accommodation.

IMPORTANT – It must be acknowledged that the Court of Appeal did not delve into the inherent complexity of these questions or make any suggestion as to how they might be answered. Many people believe that the National Framework and Decision Support Tool fail to comply with the Coughlan judgment, in setting the bar too high and making the criteria too subjective. For the purposes of this article, we shall use the criteria set out in the National Framework, as, however valid people’s concerns, these are the criteria that will be used by the NHS to assess you or your relative today.

Intensity

This relates to both the extent (‘quantity’) and severity (degree) of the needs and the support required to meet them, including the need for sustained/ongoing care (‘continuity’).

Ms. Coughlan can eat independently using a spoon strapped to her hand, provided the food is cut up for her. Someone needs to hold a cup whilst she is drinking as her hand would spasm if she touched a hot cup.

Intermittent catheterisation is performed by nursing auxiliaries every three hours; this intervention takes approximately 10 minutes plus additional time for hoisting.  Ms. Coughlan requires the insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) every second night.

Ms. Coughlan requires repositioning approximately 8 times per day to maintain skin integrity. She is able to tolerate up to 12 hours sitting in a wheelchair so long as regular pressure-relief is afforded. Ms. Coughlan is turned (side-to-side) 3-times throughout the night (at 0200, 0600 and 0900h).

Ms. Coughlan requires a full hoist, operated by 2 people, for all transfers and needs to be turned regularly when in bed. Once transferred into a wheelchair, Ms. Coughlan has a reasonable amount of independence as she has retained some (very limited) use of her hands with which she can manoeuvre her electric wheelchair. Ms. Coughlan is assisted to stand twice per week using a special frame.

In the event of an episode of autonomic dysreflexia, Ms. Coughlan requires the emergency administration of nifedipine under the tongue. Skilled anticipation of the need for this medication may be required.  Skilled, continuous monitoring of Ms. Coughlan’s condition after administration is necessary.

Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death, and for this reason should always be treated as a medical emergency. Autonomic dysreflexia exists on a continuum and is highly unpredictable. Mitigating the risk of AD attack requires expert care, continuous monitoring, anticipation of symptoms and timely, skilled intervention. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.

Ms. Coughlan’s needs do not appear to be particularly intense. The majority are met via routine care planning and her condition now appears relatively stable. Ms. Coughlan does not require a large number of interventions during a 24-hour period (quantity) and those interventions do not require an increased amount of time or staff to perform. However, it must be acknowledged that the risk of autonomic dysreflexia is severe (degree) and the skilled care required to mitigate this risk is continuous (continuity).

Complexity

This is concerned with how the needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/or manage the care. This may arise with a single condition, or it could include the presence of multiple conditions or the interactions between two or more conditions. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as when a physical health need results in the individual developing a mental health need.

Paralysis of the respiratory muscles means Ms. Coughlan is unable to clear pulmonary secretions through coughing and, therefore, is susceptible to chest infections.

While there is no acute risk of aspiration due to dysphagia, were Ms. Coughlan to aspirate food or fluids, she would be at greater risk of infection due to paralysis of the respiratory muscles.

Ms. Coughlan is doubly incontinent and is unable to relieve herself without skilled assistance. Intermittent catheterisation is performed by nursing auxiliaries every three hours to ensure frequent emptying of the bladder. Fluid intake is carefully managed to prevent overfilling.  Ms. Coughlan is unable to evacuate her bowels independently and requires the insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) every second night.  A cervical spinal cord injured person has no sensation below the level of their injury, meaning their body cannot tell them in the usual way when they need to use the toilet. All the body can do in such a situation is to trigger its “high alert” system, which it does by dramatically raising the person’s blood pressure. This condition is called autonomic dysreflexia.  Autonomic episodes are life-threatening and should be treated as a medical emergency. Urinary tract infections, constipation and other similar complications can quickly lead to autonomic episodes if not treated early. Because of the ongoing interaction between autonomic dysreflexia and bladder/bowels, expert management of Ms. Coughlan’s continence needs is essential.

Ms. Coughlan has no skin sensation or perception of skin damage due to sensory paralysis below the level of her injury. She has high vulnerability to skin breakdown as she is unable to change her position in bed or wheelchair without assistance. Even minimal pressure below the level of the spinal cord injury can quickly lead to autonomic dysreflexia; choice of clothing fabric and careful positioning are essential. Should skin breakdown occur, risk of autonomic attack would be extremely high, and healing would be complex. Ms. Coughlan requires repositioning approximately 8 times per day to maintain skin integrity. She is turned (side-to-side) 3-times throughout the night. Despite pressure-relief strategies and expert management, Ms. Coughlan has suffered pressure ulcers on her bottom. Although these areas are now healed, they remain highly vulnerable to further breakdown.

Ms. Coughlan is tetraplegic, meaning she is paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso. She has no triceps function in her arms. Ms. Coughlan requires a full hoist, operated by 2 people, for all transfers and needs to be turned regularly when in bed. Careful positioning and choice of fabrics are essential to avoid pressure below the level of the spinal cord injury, which could trigger autonomic attack. Ms. Coughlan is assisted to stand twice per week using a special frame. The process of standing requires expert supervision due to increased risk of autonomic episodes and hypertension.

Ms. Coughlan’s medication is routinely prescribed and administered by mouth; Senokot, Calcium and Iron. Ms. Coughlan requires the insertion of docusate suppositories for bowel management every second day. She has constant neurogenic root pain in her left foot which does not respond to, and is not amenable to control by, analgesics. In the event of an episode of autonomic dysreflexia, Ms. Coughlan requires the emergency administration of nifedipine under the tongue. Skilled anticipation of the need for this medication may be required.  Skilled, continuous monitoring of Ms. Coughlan’s condition after administration is necessary due to the long-lasting effect of the medication and the increased risk of constipation, which would increase the risk of further autonomic attack.

Ms. Coughlan is only able to breathe diaphragmatically and is at medium risk of fainting if her air flow was inhibited. This is managed by wearing a ‘corset’ – abdominal binder – which keeps her chest upright.  Ms. Coughlan is at increased risk of fainting when using her standing frame.

Poikilothermia: Because of her injury Ms. Coughlan is unable to maintain her core body temperature, which is unstable and variable. Pamela is able to tell when she is too hot or too cold and therefore proactive monitoring is not required regarding this aspect of her care.

Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension as a result of pain or injury below the spinal injury site (C5/6). Anything that would normally be painful, uncomfortable or physically irritating may cause dysreflexia following spinal cord injury. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death and for this reason should always be treated as a medical emergency.  There is a high degree of interrelation between continence care and autonomic dysreflexia; expert management of bladder and bowels is essential. Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. Autonomic dysreflexia exists on a continuum. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.

Ms. Coughlan’s needs are complex owing to the risks arising from autonomic dysreflexia and the particular skills required to mitigate those risks. There is a high degree of interaction between the domains of Continence, Skin, Mobility, Medications and Other Significant Needs, resulting in the need for skilled care, monitoring and anticipation. The management of symptoms in the event of AD attack, including the administration of emergency nifedipine, requires specific training, knowledge and skill.  Interventions to empty the bladder and bowel are invasive and complex due to the increased risk of AD attack at such times. Although continence interventions are routinely planned and delivered, additional care outside these times may be required and is urgent owing to the increased risk of AD attack when the bladder or bowel is full. Autonomic dysreflexia is a rare condition, unique to cervical spinal cord injured people; those meeting the needs of such an individual require specific training and additional knowledge and skill. Even experienced clinicians are often unfamiliar with the condition, highlighting the peculiarity of the needs and the skills required to meet them.

Unpredictability

This describes the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the individual’s health if adequate and timely care is not provided. An individual with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.

Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death and for this reason should always be treated as a medical emergency. It first manifested in Ms. Coughlan ~20 years post-injury, highlighting the idiosyncratic nature of the condition. Episodes were initially very unpredictable – sometimes once per month, at other times several times in a week. They were usually triggered by overfull bowel/manual bowel evacuations or overfull bladder and were controlled by emptying the bladder by intermittent catheterization or by pausing the manual evacuation procedure and elevating her head (to lower blood pressure). On all but one occasion this management prevented the need for vasodilators (nifedipine). Autonomic dysreflexia exists on a continuum and is highly unpredictable.  Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.

Ms. Coughlan’s needs are largely predictable. There is no evidence to suggest her condition is unstable or rapidly deteriorating. Ms. Coughlan’s needs are met via routine care planning and there is no evidence to suggest these fluctuate day-to-day. However, it must be acknowledged that autonomic dysreflexia is, by its very nature, unpredictable. While the frequency and severity of attack can be mitigated by skilled care, the risk of future occurrence cannot be permanently removed or eliminated.

CONCLUSION

Having considered the intensity, complexity and unpredictability of Ms. Coughlan’s needs, we conclude they cannot be described as merely ancillary or incidental to the provision of accommodation. While Ms. Coughlan does not require an increased number of interventions throughout a 24-hour period, the effects of her injury are severe. The unique challenges and interactions arising from a cervical spinal cord injury require the continuous provision of skilled care, the need for which cannot be permanently removed or eliminated. Without the provision of such daily care, Ms. Coughlan would be at risk of serious injury and death. Her primary need is for the careful management of her physical health to avoid serious medical complications, which can arise rapidly and unpredictably. Should such complications occur, immediate, skilled response will be required. Ms. Coughlan’s needs clearly present a degree of complexity that exceeds the lawful remit of Social Services. There is a degree of intensity and unpredictability to Ms. Coughlan’s needs, owing to the nature of autonomic dysreflexia.

Explaining the Vital Difference Between Health & Social Care Needs: Part 1

Explaining the Vital Difference Between Health & Social Care Needs: Part 2

Two decades after the Court of Appeal’s judgment, it would appear some people still do not accept Ms. Coughlan’s eligibility for NHS funding. Many Continuing Healthcare Assessors, and even senior staff within some Clinical Commissioning Groups, dispute the findings of the Court of Appeal, even going so far as to suggest the National Framework and Decision Support Tool are not suitable for spinal cord injured people. What lies beneath such assumptions is, we suggest, an ignorance of the severity of the needs arising from a cervical spinal cord injury and a lack of experience in caring for an individual with such an injury.

REMEMBER – The National Framework is clear that the professionals conducting the assessment must have the requisite knowledge, experience and understanding to enable them to accurately record and assess the needs. If you or your relative has a spinal cord injury, or another complex condition, you may want to ask the Clinical Commissioning Group to appoint a Special Advisor to inform the multi-disciplinary team conducting the assessment. Even if the CCG refuses to appoint such an individual, you can request this person attends the Independent Review Panel.

NOTE – You don’t have to fight this battle for CHC Funding alone. If  you need professional help or advocacy support with your assessment, MDT, appeal or a retrospective review, or just want advice about the prospects of your case, visit our 1-2-1 support page.

We hope you have enjoyed this in-depth look at the Coughlan case. If there is a particular topic you would like us to cover, we’d love to hear from you! Just send an email via our “contact us” page with the subject “blog request” and we’ll do our best to cover your suggested topic.

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Part 2. Pamela Coughlan – Needs of a “wholly different category”

Royal court of justice

Pamela Coughlan – This series of blogs takes a closer look at the Coughlan judgment, its implications for long-term care in the community and how an understanding of the clinical facts of the case can assist you in your fight for CHC Funding. In today’s blog, we address the Court of Appeal’s statement that Ms. Coughlan required “services of a wholly different category” than those that could lawfully be provided by Social Services.  If you missed Part 1 of this series, follow the link below!

Read Part One of this series – But Pamela Coughlan is not really eligible for CHC, is she…?

As we discussed in Part One, the Court of Appeal’s findings in respect of Ms. Coughlan’s care requirements in 1999 continue to underpin the eligibility criteria for Continuing Healthcare funding to this day. Of particular importance was the judge’s statement that Ms. Coughlan and her fellow residents required “services of a wholly different category” than those that could lawfully be provided by the Local Authority.

As one insightful commenter has helpfully explained under Part One of this series, the judgment also clarified the legal division between the type of care delivered by the NHS and Local Authority in the community: the Local Authority could provide nursing services as part of a package of care, but only if those services were “merely incidental or ancillary to the provision of accommodation”, and of a “nature” that Social Services could reasonably be expected provide.

“The NHS does not have sole responsibility for all nursing care. Nursing care for a chronically sick patient may in appropriate cases be provided by a local authority as a social service and the patient may be liable to meet the cost of that care according to the patient’s means. The provisions of the Health Act and the Care Act do not, therefore, make it necessarily unlawful for the Health Authority to decide to transfer responsibility for the general nursing care of Miss Coughlan to the local authority’s social services. Whether it was unlawful depends, generally, on whether the nursing services are merely

  • incidental or ancillary to the provision of the accommodation which a local authority is under a duty to provide and
  • of a nature which it can be expected that an authority whose primary responsibility is to provide social services can be expected to provide. Miss Coughlan needed services of a wholly different category.”
  1. v. North and East Devon Health Authority, ex parte Coughlan

Read the full judgment here: https://www.bailii.org/ew/cases/EWCA/Civ/1999/1871.html

In the Judge’s view, Ms. Coughlan’s needs were not “merely ancillary or incidental” to the provision of her accommodation, and were of a “nature” the Local Authority could not be expected to meet i.e., the services Ms. Coughlan required as part of her package of care were of a “wholly different category” than those expected to be provided by Social Services.

Let’s have a closer look at the nature of Ms. Coughlan’s needs and shed some light on the Court’s seemingly mysterious findings.

In Part One of this blog, we used the Spinal Injury Association’s description of Ms. Coughlan’s care requirements to assess her “level of need” in each of the twelve care domains on the 2018 Decision Support Tool. On our assessment, Ms. Coughlan presents with one SEVERE level of need in Other Significant Needs; three HIGH levels of need in Continence, Mobility and Drug Therapies; one MODERATE level of need in Skin; three LOW levels of need in Breathing, Nutrition and Altered States of Consciousness; and four NO NEEDS in Communication, Psychological & Emotional Needs, Cognition and Behaviour.

Care Domain Level of Need
Breathing LOW
Nutrition LOW
Continence HIGH
Skin MODERATE
Mobility HIGH
Communication NO NEEDS
Psychological & Emotional Needs NO NEEDS
Cognition NO NEEDS
Behaviour NO NEEDS
Drug Therapies and Medication HIGH
Altered States of Consciousness LOW
Other Significant Needs SEVERE

If you’re preparing for a CHC assessment, read our selection of helpful blogs on the subject which will let you know what to expect at the MDT:

Preparing for the Multi-Disciplinary Team Assessment

What Happens At The Multi-Disciplinary Team Meeting?

Don’t let the Decision Support Tool become a ‘tick box’ exercise

What Is The Role Of The MDT Coordinator?

Can The MDT Panel Refuse To Proceed If I Have An Advocate?

Who completes the Decision Support Tool in NHS Continuing Healthcare?

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Looking only at the assessed levels of need, it is difficult to understand why Ms. Coughlan was described as requiring services of a “wholly different category” than the vast majority of people living with Alzheimer’s or Dementia, particularly those who require 24-hour care in a residential setting. However, once we apply the “Primary Health Needs Test” to the evidence gathered in the twelve care domains, the reasons for the Court of Appeal’s description should become clear.

As anyone who has pursued a claim for NHS Continuing Healthcare Funding will know, eligibility depends on the application of the Primary Health Needs Test, a.k.a. the Four Key Characteristics of Nature, Intensity, Complexity and Unpredictability. If one or more of these criteria are found to be met, the person’s primary need is for healthcare; i.e. their needs are more than ancillary and incidental to the provision of accommodation and require care of a nature the Social Services cannot be expected to provide. The Decision Support Tool explains that “each of these characteristics may, alone or in combination, demonstrate a primary health need, because of the quality and/or quantity of care that is required to meet the individual’s needs. The totality of the overall needs and the effects of the interaction of needs should be carefully considered when completing the DST.”

If you’re preparing for a Continuing Healthcare funding assessment for yourself or on behalf of a friend or relative, read our essential tips on how Covid-19 has affected the process!

COVID-19 – The Impact on NHS Continuing Healthcare Funding (‘CHC’) and How The Current Changes Will Affect You!

Discharged from hospital to a care home? Is your relative getting their entitlement to 6 weeks’ free care?

Are you ready for 1st September 2020? CHC Funding Gets Back to Business

Let’s have a closer look at the four Key Characteristics and how they might be applied in Ms. Coughlan’s case, using the summary of needs from the Spinal Injuries Association. We shall begin by setting out the nature of the needs.

IMPORTANT – The analysis of the “nature” of the needs should be the longest and most detailed of all the characteristics. The nature characteristic should provide a comprehensive picture of the person’s holistic needs, clearly setting out their daily care requirements in each of the twelve care domains as well as the interventions required to meet them. If this description is not sufficiently detailed, it will be impossible to apply the intensity, complexity and unpredictability characteristics appropriately.

Nature

This describes the particular characteristics of an individual’s needs (which can include physical, mental health, or psychological needs), and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.

Ms. Coughlan was seriously injured in a road traffic accident in 1971. She sustained a complete C5/6 spinal cord injury. The cervical spine is located between the shoulders and the skull. In general terms, the higher the injury to the spinal cord, the more debilitating the effects. As with the majority of C5/6 spinal cord injured people, Ms. Coughlan was left with complete tetraplegia (with sensory and motor paralysis), meaning she has no sensation or movement below the level of her injury. There is no treatment for a cervical spinal cord injury, resulting in a need for life-long care.

Read more about cervical spinal cord injuries here.

There is a common misconception that CHC Funding is only available to elderly people in care homes, but many young adults also qualify. Find out more here: Who is entitled to CHC?

As a result of her injury, Ms. Coughlan is only able to breathe diaphragmatically; she wears a corset during the daytime to keep her chest upright, without which she would suffer shortness of breath. Paralysis of the respiratory muscles means Ms. Coughlan is unable to clear pulmonary secretions through coughing and, therefore, is susceptible to chest infections. (Breathing – LOW)

Ms. Coughlan maintains a healthy BMI and is not at risk of malnutrition. Her swallow is unaffected by the spinal cord injury and she is able to take normal consistency food and fluids. While there is no acute risk of aspiration due to dysphagia, were Ms. Coughlan to aspirate food or fluids, she would be at greater risk of infection due to paralysis of the respiratory muscles. Ms. Coughlan can eat independently using a spoon strapped to her hand, provided the food is cut up for her. Someone needs to hold a cup whilst she is drinking as her hand would spasm if she touched a hot cup. (Nutrition – LOW)

Ms. Coughlan is doubly incontinent and is unable to relieve herself without skilled assistance. She wears continence pads in case of accidents, but these rarely occur. Intermittent catheterisation is performed by nursing auxiliaries every three hours to ensure frequent emptying of the bladder.  Fluid intake is carefully managed to prevent overfilling, which can trigger an attack of autonomic dysreflexia, see below. Ms. Coughlan is unable to evacuate her bowels independently and requires the insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) every second night. A cervical spinal cord injured person has no sensation below the level of the injury, meaning their body cannot tell them in the usual way when they need to use the toilet. All the body can do in such a situation is to trigger its “high alert” system, which it does by dramatically raising the person’s blood pressure. This condition is called autonomic dysreflexia. Episodes are life-threatening and should be treated as a medical emergency. Urinary tract infections, constipation and other similar complications can quickly lead to autonomic episodes if not treated early. Manual evacuation procedures can trigger attacks of autonomic dysreflexia and as such require particular skill. Because of the ongoing interaction between autonomic dysreflexia and bladder/bowels, expert management of Ms. Coughlan’s continence needs is essential. (Continence – HIGH)

Autonomic dysreflexia is a rare condition. Even experienced clinicians do not always recognise the immediate risks to the individual and the need for urgent care. Listen to Tracy’s story of a frightening experience at A&E here.

Ms. Coughlan has no skin sensation or perception of skin damage due to sensory paralysis below the level of her injury. She has high vulnerability to skin breakdown as she is unable to change her position in bed or wheelchair without assistance. Even minimal pressure below the level of the spinal cord injury can quickly lead to an attack of autonomic dysreflexia; choice of clothing fabric and careful positioning are essential. Should skin breakdown occur, risk of autonomic episodes is extremely high. Ms. Coughlan requires repositioning approximately 8 times per day to maintain skin integrity. She is able to tolerate up to 12 hours sitting in a wheelchair so long as regular pressure-relief is afforded. Ms. Coughlan uses a silicon-foam cushion in her wheelchair, but tolerates a standard mattress providing she is turned (side-to-side) 3-times throughout the night (at 0200, 0600 and 0900h). She returns to bed for intermittent catheterization every 3 hours (typically for a 10 min duration), which affords regular pressure relief.  Despite pressure-relief strategies and expert management, Ms. Coughlan has suffered pressure ulcers on her bottom. Although these areas are now healed, they remain highly vulnerable to further breakdown. Skin breakdown is extremely dangerous for a spinal cord injured person due to the interaction between compromised skin integrity and autonomic dysreflexia. Should breakdown occur, healing process would be lengthy and complex. Expert management of skin integrity is essential. (Skin, including tissue viability – MODERATE)

Ms. Coughlan is tetraplegic, meaning she is paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso. She has no triceps function in her arms. Ms. Coughlan requires a full hoist, operated by 2 people, for all transfers and needs to be turned regularly when in bed. Careful positioning and choice of fabrics are essential to avoid pressure below the level of the spinal cord injury, which could trigger autonomic attack. However, once transferred into a wheelchair Ms. Coughlan has a reasonable amount of independence as she has retained some (very limited) use of her hands with which she can manoeuvre her electric wheelchair. Ms. Coughlan does not require a regular programme of active or passive physiotherapy or exercise, although being assisted to stand twice per week using a special frame helps with maintaining appropriate organ positions and strengthening her bones. The process of standing requires expert supervision due to increased risk of autonomic episodes and hypertension. (Mobility – HIGH)

Ms. Coughlan retains some (very limited) use of her hands with which she can write (with a pen strapped to her hand).  She remains completely mentally aware, can access the Internet, converse freely and represent her views articulately. (Communication – NO NEEDS, Cognition – NO NEEDS)

Ms. Coughlan’s medication is routinely prescribed and administered by mouth; Senokot, Calcium and, Iron. She does not require a complex daily regime of medications. Ms. Coughlan requires the insertion of docusate suppositories for bowel management every second day. She has constant neurogenic root pain in her left foot which is not amenable to control by analgesics. In the event of an episode of autonomic dysreflexia Ms. Coughlan requires the emergency administration of nifedipine under the tongue. Skilled anticipation of the need for this medication may be required.  Skilled, continuous monitoring of Ms. Coughlan’s condition pre-and post-administration is necessary due to the long-lasting effect of the medication and the increased risk of constipation.  Autonomic dsyreflexia exists on a continuum; the risk of attack cannot be permanently recued or removed, although expert care planning can reduce the likelihood and severity of episodes. (Drug Therapies & Medications: Symptom Control – HIGH)

Ms. Coughlan is only able to breathe diaphragmatically and is at medium risk of fainting if her air flow was inhibited. This is managed by wearing a ‘corset’ – abdominal binder – which keeps her chest upright. Ms. Coughlan is at increased risk of fainting when using her standing frame. (Altered States of Consciousness – LOW)

Poikilothermia: Because of her injury Ms. Coughlan is unable to maintain her core body temperature, which is unstable and variable. Ms. Coughlan is able to tell when she is too hot or too cold and therefore proactive monitoring is not required regarding this aspect of her care.

Autonomic dysreflexia (AD) is a unique condition arising from a cervical spinal cord injury, characterised by sudden and extreme hypertension (very high blood pressure associated with sweating and pounding headache) as a result of pain or injury below the spinal injury site (C5/6). Anything that would normally be painful, uncomfortable or physically irritating may cause dysreflexia following spinal cord injury. If left untreated, autonomic dysreflexia can lead to a stroke, epileptic fit or even death and for this reason should always be treated as a medical emergency. It first manifested in Ms. Coughlan ~20 years post-injury, highlighting the idiosyncratic nature of the condition. Episodes were initially very unpredictable – sometimes once per month, at other times several times in a week. They were usually triggered by overfull bowel/manual bowel evacuations or overfull bladder and were controlled by emptying the bladder by intermittent catheterization or by pausing the manual evacuation procedure and elevating her head (to lower blood pressure). On all but one occasion, this management prevented the need for vasodilators (nifedipine). Autonomic dysreflexia exists on a continuum and is highly unpredictable. Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention. An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence. (Other Significant Needs – SEVERE) 

Read the National Spinal Injuries Association’s Factsheet on Autonomic Dysreflexia here.

Conclusion

As should be apparent, the type of services Ms. Coughlan requires throughout the 24-hour period relate to the careful management of her physical health, without which she would be at critical risk of cerebral injury and even death.

Ms. Coughlan’s care team requires specialist knowledge of the unique challenges arising from a cervical spinal cord injury, and in particular autonomic dysreflexia.

As Tracey’s story above demonstrates, even experienced A&E clinicians, who see a wide variety of patients every day, have often never encountered autonomic dysreflexia, and are unaware of the critical risks it presents and the need for urgent care.

Owing to the nature of her needs, Ms. Coughlan requires services of a wholly different category than those that an authority whose primary responsibility is to provide social services can reasonably be expected to deliver.

While many sufferers of Dementia, Alzheimer’s and stroke also need full assistance to meet their continence, skin, mobility and medication needs, the nature of the interventions often does not exceed the type of services the Local Authority can reasonably be expected to provide, i.e., routine assistance with eating, drinking, washing, dressing, toileting, moving around safely, maintaining skin integrity and ensuring compliance with routinely prescribed oral medications. The staff meeting needs of this type would not usually require any additional skills or particular training. None of these interactions would require the oversight of a trained nurse, or other similarly skilled professional, due to the risks to the individual should poor care, or difficulty, arise. Were care to be missed for some reason – e.g. non-compliance, staff shortages, emergency – there would be no immediate, urgent risk to the person’s safety, i.e. their life would not be endangered. None of these statements would be true of Ms. Coughlan.

This concludes our examination of the Nature of Ms. Coughlan’s needs. We hope you have found it informative. Next week we shall apply the Intensity, Complexity and Unpredictability characteristics to the information we have gathered about Ms. Coughlan’s daily care requirements to see if any of those criteria are met.

Don’t miss Part 3, “Ancillary and Incidental to the Provision of Accommodation”, coming next week!

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Part 1. But Pamela Coughlan Is Not Really Eligible For CHC, Is She…?

Pamela Coughlan – This three-part series will examine the Coughlan judgment, its implications for long-term care in the community and how an understanding of the clinical facts of the case can assist you in your fight for CHC funding. In today’s blog, we address some common misconceptions about the findings of the Court of Appeal in 1999 and consider Ms. Coughlan’s daily care requirements using the 2018 Decision Support Tool.  Don’t forget to look out for Part 2, “Needs of a Wholly Different Category”, in the coming weeks!

Most people who dip their toe into the choppy waters of NHS Continuing Healthcare Funding (CHC) will encounter Pamela Coughlan. The findings of the Court of Appeal in her landmark 1999 case against North & East Devon Health Authority helped clarify the legislation underpinning the division between health and social care in England and Wales. This distinction, and the need for nationally defined criteria, led to the drafting of the National Framework for NHS Continuing Healthcare Funding (CHC) and NHS-funded Nursing Care (FNC), and the development of the CHC Checklist and Decision Support Tool as a means of determining individual eligibility for NHS-funded community care.

You can read the full text of the Court of Appeal’s findings here.

Pamela Coughlan was seriously injured in a road traffic accident in 1971.  She sustained a complete C5/6 spinal cord injury; in layman’s terms, her spinal column was severed at the neck.  As with the majority of C5/6 spinal cord injured people, Ms. Coughlan was left with complete tetraplegia (with sensory and motor paralysis), meaning she has no sensation or movement below the level of her injury. There is no treatment for a cervical spinal cord injury, resulting in a need for life-long care.

Watch an interview with Pamela Coughlan here.

The Court of Appeal judgment centred on the Health Service’s decision to close the NHS facility where Ms. Coughlan resided, its alleged failure to provide a previously assured “home for life” for Ms. Coughlan, and its attempt to shift the burden of responsibility for her care onto the Local Authority.  As social care is means-tested, this would have forced Ms. Coughlan to assume the cost of all her health and social care needs, which had previously been fully funded by the NHS. The Coughlan judgment was, therefore, fundamental in clarifying the legal division between health and social care in England and Wales and remains so to this day.

Read our blogs below for more information about the difference between healthcare and social care needs:

Part 1 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

The importance of the Court of Appeal’s judgement where we are concerned is that it categorised Ms. Coughlan as requiring “services of a wholly different category” than those provided by the Local Authority.  This one sentence, easily missed on a quick read through, continues to underpin the eligibility criteria for CHC funding all these years later.  Indeed, the National Framework draws Commissioners’ attention to “cases that have indicated circumstances in which eligibility for NHS Continuing Healthcare should have been determined, and where such an outcome would be expected if the same facts were considered in an assessment for NHS Continuing Healthcare under the National Framework (e.g. Coughlan)” (National Framework for CHC, 2018, para. 157).

All this being true, and enshrined in legislation no less, why do we encounter so many people – families and experienced CHC and legal professionals alike – who believe Ms. Coughlan is not, in fact, eligible for CHC funding? Not a week goes by without someone – a family member looking for advice, a CCG Nurse Assessor at an MDT – informing us, with great certainty, that Ms. Coughlan would not be found eligible were she assessed using the Decision Support Tool today. Many people believe that the Health Service’s agreement to fund Ms. Coughlan’s long-term care was, in fact, due to it having reneged on the promise to provide her with a home for life, and not her clinical needs. Resources abound on the internet and we hear from many, many people who have considered Ms. Coughlan’s needs, as described by various sources online, and found them to be equal to or lower than their relative’s. On that basis, they conclude, their relative must also be eligible for CHC funding.

For more information about the Coughlan decision and its relevance today, read our blog:

How relevant is the Coughlan Decision Today?

Sadly, the vast majority of those people will be disappointed and perplexed when their relative is found not eligible for CHC funding by the local Clinical Commissioning Group. They will be even more dismayed when this decision is upheld by an Independent Review Panel at NHS England and may even come to suspect foul-play.  On the basis of their understanding of Ms. Coughlan’s needs, the decision makes no sense.

So, why is there such misunderstanding about Ms. Coughlan’s needs and how they relate to the current eligibility criteria for CHC funding?  We feel it is important to answer this question and help families determine whether their relative’s needs are comparable to, or in excess of, Ms. Coughlan’s.  A significant amount of confusion arises, we believe, as a result of a lack of knowledge of Ms. Coughlan’s actual needs, which are unique and specific to a C5/6 complete spinal cord injury (cervical spine), a misunderstanding of the skill required to meet those needs on a daily basis, an overemphasis on the assessed levels of need in the Decision Support Tool and a misapprehension about the eligibility criteria for CHC funding generally.

IMPORTANT – As the Coughlan Judgment predates the National Framework for CHC funding, there is NO available Decision Support Tool for Ms. Coughlan.  The rationale for funding is, therefore, somewhat unclear, save for the Court of Appeal’s statement that she required services of a “wholly different category” to those provided by Social Services. However, Ms. Coughlan has helpfully described her daily care requirements on many occasions over the years and we can reasonably estimate her level of need in each of the twelve care domains using this information.

The following table sets out a summary of Ms. Coughlan’s needs, as described by the Spinal Injury Association, in its 2015 factsheet, ‘Coughlan Compliance’ in Decisions on NHS Continuing Healthcare. In each case, we suggest what the correct level of need would be, using the 2018 Decision Support Tool.

DOMAIN DESCRIBED NEEDS SUGGESTED LEVEL OF NEED & RATIONALE
Breathing Wears a corset during the daytime to keep her chest upright without which she would have had breathing difficulties (shortness of breath as breathing is diaphragmatic only). There were no night care issues regarding her breathing. She was susceptible to chest infections (as paralysis of respiratory muscles prevents coughing to clear pulmonary secretions), which were relatively infrequent and not usually severe. LOW

Episodes of breathlessness that readily respond to management and have no impact on daily living activities.
Nutrition Can eat independently using a spoon strapped to her hand provided that the food is cut up for her.

Someone needs to hold a cup whilst she is drinking as her hand would spasm if she touched a hot cup.

 LOW

Needs supervision, prompting with meals, or may need feeding and/or a special diet (for example to manage food intolerances/allergies).
Continence She is doubly incontinent. Needing intermittent catheterization, every 3 hours (performed by nursing auxiliaries) as this proves the most effective way of keeping dry. Fluid intake is carefully managed. She wears incontinence pads in case of leakage, but rarely gets wet. (Thus a well-managed need thereby minimizing risk of skin problems.) Able to travel and stay dry when going out and about (visiting friends etc.); she is accompanied only by a driver/handyman & manages her bladder by restricting fluid intake and using incontinence pads. Required insertion of docusate suppositories and digital removal of faeces (‘manual evacuation’) of her bowels every second night. HIGH

Continence care is problematic and requires timely and skilled intervention, beyond routine care (for example frequent bladder wash outs/irrigation, manual evacuations, frequent re-catheterisation).
Skin (including tissue viability) Has no skin sensation or perception of skin damage on large areas of her body due to sensory paralysis and has high vulnerability to skin breakdown as is unable to change her position on bed or wheelchair without assistance. She required repositioning approximately 8 times per day to maintain skin integrity. Able to tolerate up to 12 hours sitting in wheelchair so long as pressure-relief is afforded. Uses silicon-foam cushion in wheelchair, but tolerates standard mattress as is turned (side-to-side) 3-times at night (at 0200, 0600 and 0900h). Returning to bed for intermittent catheterization every 3 hours (typically for a 10 min duration) affords pressure relief. Despite pressure-relief strategies, she has had pressure ulcers on her bottom, which although healed have high vulnerability to skin breakdown. Only once did pressure ulcer become infected, necessitating an extended period of bed rest. MODERATE

Risk of skin breakdown which requires preventative intervention several times each day without which skin integrity would break down.
Mobility Paralysed in the lower part of her body with no movement in her legs, and limited movement in her upper torso.

No triceps function in her arms.

Requires hoisting (by 2 people) for all transfers and to be turned when in bed; However, once transferred into a wheelchair she has a reasonable amount of independence as she has retains some (very limited) use of her hands with which she can manoeuvre her electric wheelchair.

 HIGH

Completely unable to weight bear and is unable to assist or cooperate with transfers and/or repositioning.

OR

Due to risk of physical harm or loss of muscle tone or pain on movement needs careful positioning and is unable to cooperate.

 
Communication She retains some (very limited) use of her hands with which she can write (with a pen strapped to her hand). She remains completely mentally aware, can access the Internet, converse freely and represent her views articulately. NO NEEDS

Able to communicate clearly, verbally or non-verbally. Has a good understanding of their primary language. May require translation if English is not their first language.

 
Psychological & Emotional Needs No evidence of psychological or emotional needs that impacted on her health and well-being. NO NEEDS

Psychological and emotional needs are not having an impact on their health and well-being.

 
Cognition No cognitive impairment that had a significant effect on awareness of risk and delivery of care. She remained completely mentally aware. NO NEEDS

No evidence of impairment, confusion or disorientation.
Behaviour No behaviour that could be described as challenging. NO NEEDS

No evidence of ‘challenging’ behaviour
Drug Therapies & Medications All medication is routinely prescribed and administered by mouth; Senokot, Calcium, Iron.

Once her condition (tetraplegia) stabilised she did not require an allocated consultant nor require any interventions from ‘specialist’ healthcare professionals.

Requires insertion of docusate suppositories for bowel management every second day.

She has constant neurogenic root pain in her left foot which does not respond to and is not amenable to control by analgesics.

Does not require a regular programme of active or passive physiotherapy or exercise, although being assisted to stand twice per week helps with maintaining appropriate organ positions and strengthening her bones.

 HIGH

Requires administration and monitoring of medication regime by a registered nurse, carer or care worker specifically trained for the task because there are risks associated with the potential fluctuation of the medical condition or mental state, or risks regarding the effectiveness of the medication or the potential nature or severity of side-effects. However, with such monitoring the condition is usually non-problematic to manage.

 
Altered States of Consciousness A medium risk of fainting if air flow was inhibited (managed by wearing a ‘corset’ – abdominal binder). LOW

History of ASC but it is effectively managed and there is a low risk of harm.
Other Significant Needs Autonomic Dysreflexia (AD) (very high blood pressure associated with sweating and pounding headache) as a result of pain or injury below the spinal injury site (C5/6). Autonomic dysreflexia first manifested ~20 years post-injury. Episodes of AD were very unpredictable – sometimes once per month, at other times several times in a week. There were usually triggered by overfull bowel/manual bowel evacuations or overfull bladder and were controlled by emptying the bladder by intermittent catheterization or by pausing the manual evacuation procedure and elevating her head (to lower blood pressure). On all but one occasion this management prevented the need for vasodilators (nifedipine).

Poikilothermia: Because of her injury she was unable to maintain her core body temperature, which was unstable and variable, and consequentially, because of excessive perspiration, she required changes of clothes and the corset up to three times a day. Pamela was able to tell when she was too hot or too cold and therefore proactive monitoring was not required regarding this aspect of her care.

 SEVERE

Critical risks arising from AD, which is constant, life-threatening and unpredictable.

AD attack is caused by noxious stimuli below the level of injury.  Expert management of continence, skin integrity and mobility is essential.

Mitigating the risk of AD attack requires continuous monitoring, anticipation of symptoms and timely, skilled intervention.

An absence of AD attack should not be interpreted as a reduction in the degree of risk or the likelihood of future occurrence.

Click Here to View the 2018 Decision Support Tool

Click here to view the S.I.A.’s factsheet, ‘Coughlan Compliance’ in Decisions on NHS Continuing Healthcare’

Summary of Needs:

Now we have assessed Ms. Coughlan’s level of need in each of the twelve care domains, let’s add them to the matrix in the 2018 Decision Support Tool. 

Care Domain P S H M L N
Breathing

 

 X
Nutrition- Food and Drink

 

 X
Continence

 

 X
Skin (including tissue viability)

 

 X
Mobility

 

 X
Communication

 

 X
Psychological and Emotional Needs

 

 X
Cognition

 

 X
Behaviour

 

 X
Drug Therapies and Medication

 

 X
Altered States of Consciousness

 

 X
Other significant care needs

 

 X
Totals

 

   1 3 1 3 4

On our assessment, Ms. Coughlan presents with one SEVERE level of need in Other Significant Needs, three HIGH levels of need in Continence, Mobility and Drug Therapies, one MODERATE level of need in Skin, three LOW levels of need in Breathing, Nutrition and Altered States of Consciousness, and four NO NEEDS in Communication, Psychological & Emotional Needs, Cognition and Behaviour.

Looking solely at the assessed levels of need, it is completely understandable why people believe their relative must also be eligible for CHC funding. Many, many sufferers of Dementia, Alzheimer’s disease, Strokes and other cognitive disorders will be assessed as having a SEVERE level of need in Cognition, a HIGH level of need in Mobility, Communication and Behaviour, or Nutrition, Medication or Skin, along with a number of MODERATE and LOW levels of need in other domains. But despite their assessed levels of need being equal to, or even greater than, those of Pamela Coughlan, they will not be found eligible for CHC funding.

Why? Because, except in the case of one PRIORITY level of need or two SEVERE levels of need, eligibility for CHC funding is not determined by the assessed levels of need, but by the application of the “primary health needs test”, also known as the four Key Characteristics of Nature, Intensity, Complexity and Unpredictability.

Read our series of blogs for more information about the four Key Indicators

PART 1- Looking At The 4 Key Indicators: Unlocking the basics,

PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence

PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw

PART 4 – Looking At The Four Key Indicators: Drafting Your Conclusions

Before we can assess Ms. Coughlan’s eligibility for CHC funding, we need to consider the nature, intensity, complexity and unpredictability of her needs, based on the information we have gathered in the twelve care domains. And that’s exactly what we’ll do in part two of this series, Needs of a Wholly Different Category, coming soon!

 

Don’t miss out! Subscribe to our blog about care fees and NHS Continuing Healthcare and be the first to read them as they are released…

 

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What To Do If You Haven’t Received Your MDT Decision Or Received CHC Funding?

MDT Decision – We have come across several examples recently where individuals have been assessed for NHS Continuing Healthcare Funding, but have either never been told the outcome, or else have been given a positive outcome, but NHS funding was never put in place.

We’ll tell you how to handle these situations, but first the background…

NHS Continuing Healthcare is a package of ongoing care for long-term healthcare needs which is funded solely by the NHS, for an individual, aged 18 or over, who meets certain prescribed criteria due to their intense, complex or unpredictable and challenging healthcare needs, usually arising from a disability, accident or illness.

Getting NHS Continuing Healthcare Funding (CHC) can be a difficult and complex process, which many families find fraught with stress, anxiety and emotion, as they battle with their local NHS Clinical Commissioning Group (CCG) to try and secure free funded NHS care for their spouse or relative.

The bar to achieving CHC Funding is set high and many individuals who apply are turned down as their healthcare needs simply don’t meet the eligibility criteria. But, if successful, it can be a huge relief as the financial burden then passes to the CCG. The CCG then has direct responsibility to pay for the individual’s assessed healthcare needs (including social care needs) as well as their accommodation. In effect, all care fees should now be paid for in full, free of charge, by the NHS.

So, where applicable, accessing CHC Funding is critical as it can save families many thousands of pounds a month in self-funding care fees.

The ultimate need to secure funding is stressful and weighs heavily on most families going through the assessment process. They quickly recognise the vast financial gulf between their relative being found eligible or ineligible for CHC Funding, and the potential risk that their relative could lose their life’s savings or have to sell their home to pay for their care, if unsuccessful.

The Full Assessment at an MDT

The full assessment for CHC Funding is carried out by a Multi-Disciplinary Panel (MDT) whose objective is to make a recommendation as to the individual’s eligibility for CHC. The MDT are obliged to follow the assessment process set out in the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.

The MDT will consist of at least 2 panel members who are from different healthcare professions; usually one healthcare and one social care professional. Where possible, it is recommended that the MDT assessors have recently been involved in the assessment, treatment or care of the individual, are familiar with their needs, and have been trained in the National Framework and how to conduct robust and fair assessments.

The MDT assessors will collate and review the relevant information on the individual’s health and social care needs (usually by reference to care home, GP and hospital records).

The MDT assessment is intended to be ‘person centric’ and put the individual at the heart of the assessment process. It is important that their needs and views (or those of their appointed family or professional advocate) are taken into consideration and not ignored or dismissed out of hand. The family representatives must be consulted and invited to attend the MDT; failure to do so is an abuse of process and immediate grounds for appeal.

The assessors will review the evidence and complete a picture of the individual’s healthcare needs using the Decision Support Tool (DST).

The DST is simply a means of collating and consolidating the evidence in a practical written format in conjunction with predetermined ‘descriptors’ as to levels of need. It is not the decision itself.

Using the evidence set out in the DST, the MDT assessors will then make a professional judgment about whether the individual meets the eligibility for NHS Continuing Healthcare.

Based on their findings and judgment, they will then submit the DST and their conclusions back to the CCG with a recommendation as to CHC Funding with their reasons (‘rationale’).

Ultimately, the CCGs are responsible for decision-making as to eligibility for CHC, which should be based on the MDT’s recommendations. After all, their appointed assessors have had the benefit of spending time with the individual and their family representatives, and reviewing, and (hopefully) carefully listening to their needs. So, unless the MDT assessors’ recommendation is perverse and against the run of evidence (or more information is needed), you would usually expect the CCG to follow the MDT’s recommendations.

The National Framework states that: “Only in exceptional circumstances, and for clearly articulated reasons, should the multidisciplinary team’s recommendation not be followed.”

But beware! Just because the MDT have given the family positive encouragement and have recommended CHC Funding, it isn’t guaranteed. Unfortunately, we have noted an increase in cases where CCGs have taken a contrary position to their assessors’ recommendations for CHC.

Once the CCG has made its decision as to eligibility, the outcome should be notified in writing to the individual as soon as possible (usually within 48 hours/2 working days) of receiving the MDT’s recommendations. In addition, for transparency, the individual should be given a copy of the completed DST, the rationale for the outcome decision, and where known, an indication of the proposed care package and what the next steps are.

What happens if you don’t receive the decision outcome letter?

Much thought, time and preparation is needed if families (or their appointed advocates) are going to represent their relative at an MDT. Good preparation and planning is essential. As stated above, the outcome is critical in terms of who pays for care. The MDT is often the first real chance of securing CHC, and a good showing at the MDT is essential for early success.

We recently heard of a scenario where one family had their MDT about 2 years ago and the assessors indicated they would be recommending CHC Funding, but despite numerous chasers, are still waiting for the CCG’s outcome letter to arrive. So, having pursued their relative’s complex claim for much needed CHC at an intense MDT, spent hours preparing and reviewing the notes and records, rehearsing the evidence and their arguments for the assessors, having sleepless nights, and suffering with anxiety knowing how important the outcome is, it seems grossly unfair and unreasonable that the outcome decision still remains unknown. Understandably, this has caused distress and left them hugely frustrated.

If you don’t hear anything after 2 days, you must chase the CCG. Do not give up!

If your relative is found eligible for CHC, the CCG should arrange to take over payment of the care fees with immediate effect, wherever that care is provided, whether at home, in a care home, or other care facility. The CCG will contact the care provider and enter into a a contract to arrange payment. So, it is in your relative’s interests to chase up this decision. Why wait longer than necessary? Don’t be afraid of chasing frequently once the 2 day period has elapsed. If you don’t, your relative could miss out on vital care or end up paying for their own care unnecessarily!

If appropriate, lodge a formal complaint immediately with the CCG and copy in the Chief Executive.

What if CHC is awarded but not paid?

It does happen that a CCG will ratify the MDT’s decision and confirm that the individual is eligible for CHC Funding, but then omit to set payment in motion or implement the assessed package of care. As above, it could mean that your relative misses out on essential care (eg if living at home) or ends up being chased by the care home for payment instead, risking eviction.

If a relative is being cared for at home, that can force family members to give up work to look after them or paying for additional carers to come in to help out. Looking after a relative at home with complex and challenging needs can be extremely difficult and tiring, not to mention challenging.

So, be sure to chase up payment and don’t just assume the CCG will pay on time! Things can slip through the net. Although rare, it does happen, and you need to be alert to make sure it doesn’t happen to your relative.

If you are looking after a relative who hasn’t received their CHC care then consider making a claim against the CCG for restitution.

The NHS Continuing Healthcare Refreshed Redress Guidance will assist you if you’ve suffered any financial loss (e.g. taken time off work and lost earnings), been caused distress, had to pay for professional carers to come in and do the job the CCG were supposed to action and pay for. Keep a note of all additional time you’ve spent, and all invoices and receipts. You may well be able to claim them back on account of their maladministration. Keeping evidence of your expenditure and loss is vital.

The Refreshed Redress Guidance maintains the long-established principle that “where maladministration has resulted in financial injustice, the principle of redress should generally be to return individuals to the position they would have been in but for the maladministration which occurred.”

Before you embark on a claim of this nature, we recommend that you seek professional advice to assess the merits of your claim and to maximise your losses. If you need help, visit our 1-2-1 Support page.

Our Care To Be Different website is packed full of helpful articles to give you advice and assistance at every stage of your assessment for CHC. Here’s a small selection of related articles that you might find helpful:

Preparing for the Multi-Disciplinary Team Assessment

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

What to do if you’ve been excluded from the MDT Assessment?

Retrospective Review Claims – Everything You Need To Know About Claiming Interest

Paying Unfair Top-Up Fees? Latest Developments Will Send Shockwaves To Care Homes

Problems with care home records? Mind your language…

Let us know if you’ve ever had to wait an inordinate time to receive your positive outcome letter following a successful MDT, or never received funding after an award was made in your relative’s favour…

 

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